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SystematicReview
Masters’andLL.D.DissertationsonDisabilityinMalta
Writtenby:
DrLaraBezzina
onbehalfoftheDeparmentofDisabilityStudies,FacultyforSocialWellbeingattheUniversityofMalta
andtheCommissionontheRightsofPersonswithDisability
November2018
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TableofContents
ContentsSystematicReview..................................................................................................................................1
Masters’andLL.D.DissertationsonDisabilityinMalta.........................................................................1
TableofContents...............................................................................................................................2
ListofAbbreviations...........................................................................................................................4
Acknowledgements............................................................................................................................5
INTRODUCTION......................................................................................................................................6
Methodology......................................................................................................................................6
IdentificationofDissertations........................................................................................................6
SelectionofDissertations...............................................................................................................7
ReviewofDissertations..................................................................................................................7
ReviewOutline...............................................................................................................................8
Limitations......................................................................................................................................8
REVIEW...................................................................................................................................................9
HumanRightsandLegalAspects............................................................................................................9
DisabilityMovement..........................................................................................................................9
DisabilityRights&Non-Discrimination..............................................................................................9
‘LegalInsanity’andLegalCapacity...................................................................................................14
Legal‘Insanity’..............................................................................................................................14
LegalCapacity...............................................................................................................................16
BioethicsandGenetics.....................................................................................................................18
LifeAreas..............................................................................................................................................21
Education.........................................................................................................................................21
StudentswithDyslexia.................................................................................................................21
StudentswithADHD.....................................................................................................................21
StudentswithSEBD......................................................................................................................22
StudentswithSevereDisability....................................................................................................26
StudentswithHighAbility............................................................................................................26
PerceptionsandAttitudestowardsStudentswithDisability.......................................................27
TheRoleoftheINCO....................................................................................................................28
TheTransitiontoSecondaryEducation........................................................................................29
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TheTransitiontoPost-SecondaryLifeandBeyond......................................................................29
TheUniversityExperience............................................................................................................31
Employment.....................................................................................................................................31
InformationandComputer-BasedTechnology................................................................................35
Leisure,CultureandSport................................................................................................................37
LeisureandCulture......................................................................................................................37
Sport.............................................................................................................................................38
IntimateRelationshipsandSexuality...............................................................................................39
Services................................................................................................................................................41
CommunityServices.........................................................................................................................41
ResidentialSettings..........................................................................................................................41
PsychologicalandCounsellingServices............................................................................................43
StagesofLife........................................................................................................................................46
Children............................................................................................................................................46
Youth................................................................................................................................................47
Families............................................................................................................................................48
FamiliesandCouples....................................................................................................................48
Parents.........................................................................................................................................50
Siblings.........................................................................................................................................52
Impairments.........................................................................................................................................54
TheDeafCommunity........................................................................................................................54
PersonswithIntellectualDisability..................................................................................................54
PersonswithMentalHealthIssues..................................................................................................55
MentalHealthandHospitalisation...............................................................................................57
CONCLUSION........................................................................................................................................59
ListofDissertations..............................................................................................................................60
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ListofAbbreviationsAAC AugmentativeandAlternativeCommunicationADHD AttentionDeficitHyperactivityDisorderAT AssistiveTechnologyCRPD CommissionfortheRightsofPersonswithDisabilityECHR EuropeanConventionfortheProtectionofHumanRightsandFundamentalFreedomsEOA EqualOpportunities(PersonswithDisability)ActEPA EnduringPowerofAttorneyEU EuropeanUnionFITA FoundationforInformationTechnologyAccesibilityHR HumanResourcesIBL Inquiry-BasedLearningICT InformationCommunicationsTechnologyIEN IndividualEducationalNeedINCO InclusionCoordinatorITS InstituteofTourismStudiesLSE LearningSupportEducatorLSZ LearningSupportZoneMCAST MaltaCollegeofArts,Science&TechnologyMCH MountCarmelHospitalMS MultipleSclerosisNGO Non-GovernmentalOrganisationPSD PersonalandSocialDevelopmentSEBD Social,EmotionalandBehaviouralDifficultiesUN UnitedNationsUNCRPD UnitedNationsConventionontheRightsofPersonswithDisabilitiesUoM UniversityofMaltaVR VirtualReality
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AcknowledgementsThis review would not have been possible without the help and support of many people whodedicatedtheirtimeinordertomakethishappen.Firstandforemost,mythanksgototheacademicandadministrativestaffat theDepartmentofDisabilityStudiesat theFaculty forSocialWellbeing(at the University of Malta), namely: Dr Anne-Marie Callus who, with her endless patience andguidance, enabled this review;MsDorianne Cortis,whowas always ready to helpme access thenecessary dissertations despite her busy schedule; and Prof Andrew Azzopardi for his support.FurtherthanksgotothestaffattheDepartmentofCounselling;aswellasthoseattheCommissionfor the Rights of People with Disability for their friendly welcome and support in accessing thedissertationsattheWenzuDalliResourceCentre.Finally,Iwouldliketoextendmythankstothosefriendsandpersonalcontactswhohelpedmeaccessotherwiseinaccessibledissertations;aswellasfriendsandfamilywhosupportedmeinmanydifferentwaysthroughout.
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INTRODUCTION
This systematic research review identifies and looks at dissertations relating to disability inMalta
that were produced in fulfillment (partial or otherwise) of Masters’ degrees and LL.D (Doctor of
Laws) from 2000 to the beginning of 2018 at the University of Malta (UoM) and in foreign
universities.Sincemostof thesedissertationsareunpublished, it ishoped that this reviewwillbe
useful in bringing to the fore research findings ondisability inMalta. The aimof this review is to
provideaclearerpictureof:
• how to better serve people with disability in Malta, through the identification of the
challenges and support which different groups of disabled people in Malta encounter in
theirdailylives;
• whichareas(ondisabilityissuesinMalta)havebeenmoreresearchedandthoselessso;and
• whichareas,relevanttodisabledpeople’slivesinMalta,needtobefurtherexplored.
Methodology
IdentificationofDissertations
ThedissertationstobereviewedwereidentifiedthroughsearchingontheUoMLibraryportalHyDi,
the UoM Library’s online catalogue, and the UoM Institutional Repository, OAR@UM. The latter
included searches from the following Faculties andCentres: Centre for Labour Studies, Centre for
EntrepreneurshipandBusinessIncubation,CentreforEnvironmentalEducation&Research,Centre
forResilienceandSocio-EmotionalHealth,Centre for LiberalArts&Sciences,Euro-Mediterranean
Centre for Educational Research, European Centre for Gerontology, Faculty for Social Wellbeing,
Faculty fortheBuiltEnvironment,FacultyofArts,FacultyofEducation,FacultyofHealthSciences,
Faculty of Laws, Faculty of Media and Knowledge Sciences, Faculty of Theology, Institute for
European Studies, Institute for Tourism, Travel & Culture, Insitute of Linguistics and Language
Technology,andSchoolofPerformingArts.
Searches were conducted using key search terms including ‘masters’ ‘dissertations’,
‘disability’,‘disabledpeople’,‘peoplewithdisability’and‘specialneeds’(thelatterwasusedinorder
toensuretheidentificationofolderdissertations).Otherdissertations,includingonescarriedoutat
foreignuniveristies,wereidentifiedthroughtheWenzuDalliResourceCentreattheCommissionfor
theRightsofPersonswithDisability(CRPD)premises;theonlineDisabilityArchiveattheCentrefor
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Disability Studies at the University of Leeds; the academic staff at the Department of Disability
StudiesattheUoM;internetsearches;personalcontacts;andreferencesindissertationsreviewed.
SelectionofDissertations
Thedissertationsreviewedwerethosewhichweresubmittedfromtheyear2000onwards.This is
theyeartheEqualOpportunitiesAct1cameintoforce,sincefindingsearlierthanthisdatewouldnot
beas relevant to theaimof thepresent review.Theenddatewas set to the startof2018, since
dissertationssubmittedduringthatperiodwerealreadyavailableatthestartofthisreview.
Thedissertations selectedwere thosewhicharebasedon the socialmodelofdisabilityor
related ones, such as the human rights model, the biopsychosocial model, and the affirmation
model.Forthisreason,thosedissertationswhichresearchthemedicalaspectsofdisabilitywerenot
included.Furthermore,thedissertationsrevieweddealwiththetopicofdisabilityinMaltaandare
ones which deal with disability as a main topic, not as a by-product of the main topic of the
dissertation.
ReviewofDissertations
Atotalof93dissertationswerereviewed.Themethodemployedinreviewingthedissertationswas
thefollowing.Theabstractwasreadfirst,andthesalientpointsofthedissertationwereidentified.
Subsequently, those points were elaborated on through the relevant parts of the dissertation: in
socialsciencedissertationsthesepartsaremainlytheintroduction,results,analysisandconclusions.
In other dissertations such as legal ones, which are not always divided thus, themost important
chapterswerelookedat,or,whererelevant,thosepartswhichdealwiththeMaltesecontext.
Thereviewinthenextchaptergivesanindicationofwhateachdissertationentails,givingas
wholisticoverviewaspossible.Somedissertationsaredelvedintomorethanothersduetovarious
reasons,including:becausetheyexploreoriginaltopics(thatis,topicswhichwerenotresearchedby
other students) or becausemore detail is needed in order to explain the topic. Otherswere not
exploredingreatdetailduetoreasonssuchasthefactthatnotallthedissertationwouldbeon/
relevanttotheMaltesecontext/disability.
This review does not cover all the parts of each dissertation covered. In reviewing the
dissertations,dueconsiderationwasgiven to the importanceand relevanceof theoutcomeswith
regards toCRPD’sworkwithdisabledpeople inMalta. Furthermore, importancewasgiven to the
most significant findings of the dissertation, rather than to topics which are just touched upon.
Emphasiswasputontherecommendationsputforwardbyauthors,inordertobringoutthemore
1Chapter413oftheLawsofMalta:EqualOpportunities(Personswithdisability)Act(2000).
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practicalaspectsofthedissertationsandthuslaythebasisforfutureresearchandaction.Wherethe
recommendations have since been implemented, this was noted in the review itself in the
‘Reviewer’sNote’.Wheresignificanttotheresultsofthedissertation,themethodologyandsample
sizewerealsomentioned.
ReviewOutlineThe review in the subsequent chapter is divided by theme, with a section for each theme (for
example education, employment, etc.) which is covered by the dissertations reviewed. Where
necessary,thesectionisthendividedintosub-sections.Someofthesections,ratherthanbytheme,
relatetoaspecificimpairment,duetothefactthattherearedissertationswhollydedicatedtothat
specificimpairment.
Evidently, somedissertationscovermore thanone theme/ impairment.Where this is the
case,cross-referenceswereutilised inorder to refer the reader to the relevantsectionwhere the
sametheme/ impairment isdiscussed.Nonetheless,eachsectionandsub-sectionisastand-alone
one in the sense that it can be read and understood on its own.Where there ismore than one
authorwiththesamesurnamewhosubmittedadissertationinthesameyear,thenameinitialwas
usedinthetextsoastodifferentiatebetweenauthors.
Limitations
While carewas taken to identify all the relevant dissertations, it is possible that theUoM search
enginesmentionedabovemightnothaveshownallresults.However,theuseofbothsearchengines
and other sources helped to mitigate this possible limitation. Since dissertations submitted to
foreign universitieswere partly identified through enquiries, however, some of thesemight have
beenmissed.
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REVIEW
HumanRightsandLegalAspects
DisabilityMovement
ThelackofadisabilitymovementinMaltaisexploredbyCardona(2007)andAzzopardi(2000).Both
authors identify the reasons for this absence and cite, among others, factors such as the large
numberofdisabilityorganisationscontrolledbynon-disabledpeople,aswellasthefragmentation
amongst (and, as Azzopardi notes, sometimes within) disability groups into impairment-specific
ones.Azzopardialsonotesthefactthatdisabledpeopledonotfeeladequatelypreparedforproper
activism, one of the reasons being the over-involvement of parents. Furthermore, both authors
bring to the fore thecharity-basedmodelapproach todisability inMaltawhichmanifests itself in
sucheventsascampaignstoraisefundswhichoftendemeanandhumiliatedisabledpeople.These
perceptions,Cardonanotes,remain largelyunchallengedduetothe lackofadisabilitymovement.
Ultimately, Azzopardi concludes that the climate is ripe for the setting up of a coalition of
organisationsthatcaneffectivelycombattheoppressionofdisabledpople;whileCardona,writing
sevenyears later,observestheemergenceoftheopposingoftraditionalviewsofdisabledpeople,
partlythroughhis(no-longerexisiting)MalteseCouncilofDisabledPersons,thefirstMaltesecross-
impairment organisation adopting the social model of disability. Unfortunately, the disability
movement inMalta seems tobe still non-existentat the timeofwriting this review in2018,with
someofthereasonscitedbybothauthorsstillbeinginexistence.Thusrecommendationsmadeby
Azzopardi, suchas theunionisingby federating theexistingorganisations, still stand.AsAzzopardi
himself noted, while there is a Federation of Organisations Persons with Disability2, there were
respondentswhodidnotunderstanditsroleorresponsibility.Furthermore,Cardonanotestheneed
formoreempoweringandtransformativeemancipatoryresearchinordertomovetowardsasociety
inwhichdisabledpeople’squalityoflifeis,inhisownwords,“justlikeanybodyelse’s”.
DisabilityRights&Non-Discrimination
Pulis(2001)looksattheEqualOpportunities(PersonswithDisability)Actof2000(EOA)3andgivesa
historicaloverviewandevaluationofthesituationofdisabledpeoplepriortothisAct,includingkey
legislations and milestones relating to disability. The author emphasises that full inclusion and
integrationofdisabledpeoplewouldbebenficialtoall:personswithdisabilitieswouldachievetheir
2https://maltafederationoforganisationspersonswithdisability.wordpress.com3Chapter413oftheLawsofMalta:EqualOpportunities(PersonswithDisability)Act(2000).Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=8879&l=1
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duerights,governmentswouldbesubstantiallyrelievedfromtheburdenofsocialbenefits,andthe
taxpayers would be alleviated from contributing for such purposes. Meanwhile, Borg (2011) and
Cutajar (2006) – in attempting to establish whether the rights of persons with disabilities are
effectivelyprotectedthroughthelegalsysteminMaltaasstatedintheconventionsandlegislations
oftheUnitedNations(UN),theEuropeanUnion(EU),theCouncilofEuropeandnationallegislation
– state thatwhile the rights of personswithdisabilities arebeingprotected, adequateprotection
againstdiscriminationtowardsdisabledpeopleshouldbeprovidedintheMalteseconstitution;and
that hadMalta adhered to the European Social Charter4 protocol5,Maltese citizens could benefit
fromthecollectivecomplaintssystemavailableinthisCharter.However,Pulis,BorgandCutajarall
suggest that legislation on its own is not enough. Pulis observes that formal equality, such as
enactinglawswhichimposequotasonemployers(whichisdiscussedindepthinthe‘Employment’
sectionbelow)donotwork:what isneeded is ratherpositiveaction inorder todoawaywiththe
ingrainedmentality of discrmination and exclusion by society towards disabled people. Borg also
states that most of the laws pertaining to persons with disabilities fail to take into account the
diversity between disabled persons, who need different resources depending on their disability.
Furthermore, sheargues that itwouldbebetter if theCommission for theRightsofPersonswith
Disabilities(CRPD)6wereentrustedsolelywitheithertheroleofimplementation(ofpolicies)orthat
ofmonitoring(their implementation): inordertobettersafeguardrights, itwouldbebesttohave
two different entities. Borg also suggests the implementation of other aspects outside the legal
system,including:
• betterawarenessoftheserights;
• thecollectionofdataonpersonswithdisability;and
• a network between various disability non-governmental organisations (NGOs) and
committeesthatwillensurethebetterimplementationoftheserights.
Ultimately, rights are of little value if they are not accessible: as Borg and Cutajar both observe,
persons with disability face barriers in access to courts, since they are at times precluded from
personallyappearingatcourtbecauseofpovertyandphysicaldisability (anobservationechoed in
the‘Employment’sectionbelow).AsBorgpointsout,theCRPDcanonlybringanactionbeforethe
courtonceithasbeenconcludedthatnoamicablesettlement,foraparticularcomplaint,hasbeen
achieved.At timescourts fail to take intoconsideration theneedsand impairmentsof theperson
4TreatyNo.035oftheCouncilofEurope:EuropeanSocialCharter(1961).Availableat:https://www.coe.int/en/web/conventions/full-list/-/conventions/treaty/0355TreatyNo.158oftheCouncilofEurope:AdditionalProtocoltotheEuropeanSocialCharterProvidingforaSystemofCollectiveComplaints.Availableat:https://www.coe.int/en/web/conventions/full-list/-/conventions/treaty/1586http://crpd.org.mt.FormerlyknownasKummisjoniNazzjonaliPersunib’Diżabilta’(KNPD).
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withdisabilityandtheeffectithasonhis/herlife,aswasseeninthepartialreversal,bytheCourtof
Appeal, of the decision taken by the Court of First Instance on the Case Il-Kummisjoni Nazzjonali
Persuni b’Diżabilta’ v. Michele Peresso Limited (2007). Borg states that courts should strive to
interpretandapply legislation inamanner thatbetterprotects the rightsofdisabledpeople (and
not give rulings based on the medical model of disability); and that the general public is also
persuadedoftheworthoflegislationprotectingdisabledpeople’srights.
While Pulis, Borg and Cutajar take a wide approach to the legislative frameworks protecting
disabledpeople’srights,Grech(2017),Busuttil(2017)andCamilleri(2012)focusmorespecificallyon
theUnitedNationsConventionon theRightsofPersonswithDisabilities (UNCRPD)7, theEU’sand
Malta’sratification–andlackofcompliancewithcertainarticles–oftheConventionanditsoptional
protocol8, and the subsequent amendments to the EOA. The authors provide a number of
recommendations aimed at ensuring the full inclusion of disabled people in Maltese society,
including:
• theearlyandfullinvolvementofdisabledpeopleinpolicymaking;
• reasonableaccommodationtoensuredisabledpeople’sfullparticipationinallareasoflife;
• thecreationofasingleNationalHumanRightsInstitution9;
• theenactmentof theBill10whichenablestheprovisionsof theUNCRPDtobeenforceable
aspartoftheLawsofMalta;
• theinclusionofdisabilityasanareawherediscriminationisunconstitutional;
• ensuringequalrighttoworkfordisabledpersons;
• ensuring that when criminally charged persons with disability are to be informed in an
accessibleformat;
• ensuringthatwhenvoting,personswithdisabilitycanbeassistedbyatrustedfriend;and
• thedevelopmentofmoreeffectivedisabilityawarenessraisingcampaigns.
OtherrecommendationsspecifictotheEOAinclude:
7UnitedNationsConventionontheRightsofPersonswithDisabilities(2006).Availableat:https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html8OptionalProtocoltotheUnitedNationsConventionontheRightsofPersonswithDisabilities.Availableat:https://www.ohchr.org/en/hrbodies/crpd/pages/optionalprotocolrightspersonswithdisabilities.aspx9In2014,thegovernmentlaunchedascopingconsultationtocollectinputfromthecivilsociety,tradeunions,politicalparties,governmentalinstitutionsandthegeneralpublicontheHumanRightsFrameworkinMalta.AcommonrecommendationinmostofthefeedbackreceivedreferredtothesettingupofanindependentNationalHumanRightsInstituion(NHRI).Moreinformationcanbefoundhere:https://meae.gov.mt/en/Public_Consultations/MSDC/Pages/Consultations/HumanRights.aspx10BillNo.104:UnitedNationsConventionontheRightsofPersonswithDisabilitiesBill(2015).Availableat:https://parlament.mt/12th-leg/bills-12th/bill-no-104
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• thattheBoardsetupbytheEOAwiththeaimofdeterminingwhatisreasonableshouldhave
its current scope changed and focus on seeking accommodation rather thanwhat hinders
suchaccommodation;
• with regards toArticle 19of theConvention (on the rightof personswithdisability to live
independently),itisrecommendedthatthisrightwithintheEOAshouldbeamendedsothat
disabled persons are provided with a choice of living arrangements with the necessary
support;
• thattheobligationsofguardiansofpersonswithdisabilityaresubject totherightspresent
withintheEOA,particularlytherightpresentinarticle3(8);
• the contribution that employers are asked to contribute when not complying with the
employmentquotaaretobeincreasedpossiblyuptotheminimumwage,thusreducingthe
possibilitythatemployersoptoutfromemployingpersonswithdisability(anissuediscussed
moreindepthinthe‘Employment’section);and
• thatmoraldamagesasenvisagedintheEOAareincreased.
Zoomingfurtherin,Bezzina(2015)looksatinteragencycollaborationandtheNationalPolicyon
theRightsofPersonswithDisability11of2014,exploring itsorigins,drafting,which interestswere
addressed and which were the pressure groups lobbying for such a policy. After conducting
interviewswithrepresentativesofdifferentgovernmentdepartmentsaswellas theCRPDandthe
Kumitat Azzjoni Lejn Soċjeta’ Ġusta12, the author reports that while most interviewees express
similar ideasofwhat theyunderstandby interagency collaboration–andall of themagreeon its
advantages–fewareconvincedthatthisisactuallyhappenninginMalta.Furthermore,thereseems
tobeanagreementthatinteragencycollaborationshouldbeatop-downprocess,startingatthetop
levelsoftheagenciesinvolvedandthenflowingtowardsthelowerlevels.Incontrasttothis,notall
interviewees agree at what stage in policymaking interagency collaboration should commence.
Interestingly, Bezzina finds that this type of collaboration was more present in the process of
formulating the Initial Report submitted byMalta under article 35 of theUNCRPD13, than on the
afore-mentionedpolicyand theconsultativedocument thatwas issuedprior to thepublicationof
thepolicyitself.
Farrugia(2015)andBrincat(2014)toolookatMalta’scompliancewiththeUNCRPD,specifically
with regards to its articles12 (onequal recognitionbefore the law)and13 (onaccess to justice),
11NationalPolicyontheRightsofPersonswithDisability(2014).Availableat:https://activeageing.gov.mt/en/Pages/National-Policy-on-the-Rights-of-Persons-with-Disability.aspx12https://activeageing.gov.mt/en/News/Pages/Jitwaqqaf-il-Kumitat-Azzjoni-Lejn-So%C4%8Bjeta'-%C4%A0usta.aspx13Thereportisavailableat:https://www.gov.mt/en/Government/Press%20Releases/Documents/pr150271a.pdf
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arguing thatMalta is not in line with the Convention on these aspects as its laws are based on
substitutedecision-making,ratherthansupporteddecision-makingasproposedbytheUNCRPD.The
Mental Health Act14 still permits interdiction and incapacitaion, which revoke and limit the legal
capacityofthepersonconcerned,whiletheUNCRPDclearlyarguesthattheseshouldbeabolished.
Guardianship legislation15, although a step in the right direction and an improvement on the
previously existing legal tools – such as in providing for concrete measures to ensure the
accountabilityoftheguardians–isstillahalfmeasureanddoesnotfullycomplywiththeUNCRPD.
FarrugiaandBrincatthusarguefor:
• supporteddecision-makinglegislation;
• moreregularreviewsoftheguardianshiporders,
• theassignmentsofmonitorstoguardianships;and
• theintroductionofanAdultProtectionAct.
Relatedly,Ellul(2015)analysestheMentalHealthActandthehumanrightsandsocialinclusion
ofpersonswithmentalhealthproblems(whicharefurtherexploredinthesub-section‘Personswith
MentalHealthIssues’).Theauthorexploresthediscriminationandstigmathatpeoplewithmental
healthproblemsfaceandanalysesthevariousprovisionsfoundintheMentalHealthActinrelation
to the UNCRPD. She argues that such provisions as those regarding community based services,
voluntaryadmissiontoamentalhealthfacilityandthesettingupoftheOfficeoftheCommissioner
forMentalHealth16areallmeasureswhichhelptosafeguardthehumanrightsanddignityofpeople
withmentalhealthproblems.However,shealsonotesthattheMentalHealthActdoesnotdoaway
with involuntary admissions, and suggests that it should bemade explicitly clear throughout the
provisionsthatinrespecttoadmissionstomentalhealthlicencedfacilities,voluntaryadmissionsare
thepreferredalternativestoinvoluntaryones.
Human rights with regards people with mental health problems are also explored by Gatt
(2016),who looks at the prohibition of inhuman and degrading treatment of prisoners under the
European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR)17,
whose provisions are incorporated inMaltese law. Gatt looks at the treatment of prisoners with
mentalhealthproblemsataEuropeanlevelandalsoinMalta,includingcourtcaseswithregardsto
this issue. She concludes that in Malta, an infrastructural change for the accommodation of
14Chapter525oftheLawsofMalta:MentalHealthAct.Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=11962&l=115ActNo.XXIVof2012.Availableat:http://justiceservices.gov.mt/DownloadDocument.aspx?app=lp&itemid=24286&l=116https://deputyprimeminister.gov.mt/en/CommMentalHealth/Pages/Commissioner-For-Mental-Health.aspx17EuropeanConventionfortheProtectionofHumanRightsandFundamentalFreedomsoftheCouncilofEurope(1953).Availableat:https://www.echr.coe.int/Pages/home.aspx?p=basictexts&c
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prisonerswithmentalhealthproblemsattheMountCarmelHospital(MCH)18ForensicUnitneedsto
takeplace:theplaceisnotlargeenoughforthealways-increasingnumberofprisoners.Theauthor
mentions that other states are trying to divert prisoners with mental health problems from the
criminal justicesystem(anissuewhichisdiscussedfurtherinthesubsequentsection)byproviding
prison diversion schemes,which have contributed towards reducing overcrowding in prisons. She
alsoemphasisestheimportanceofprisonauthoritiesandprisonersmaintaininganactiveroleinthe
developmentprocessofdomesticmentalhealthpolicydevelopment.Furthermore, reintegratinga
prisonerwithamentalhealthproblemback intosocietywillcauseexacerbatedchallenges ifone’s
mental healthneedsarenot addressed. In addition, thereneeds tobea continuationof the care
fromprisontothecommunitysetting,giventhatmanypersonswithmentalhealthproblemsalready
facedifficultiesinmanagingtheirbasicneedswithoutsubstantialdistress.Therefore,itisofutmost
importance that offenders, after completing their sentence, are given guidance and support to
maintainahealthyandcrime-freelifestyleinthecommunity.
‘LegalInsanity’andLegalCapacity
Legal‘Insanity’
The four dissertations discussed in this sub-section look at ‘legal insanity’19 and other grounds of
exemptionrelatedtodisabilityundertheMalteseCriminalCode20.
Camilleri(2017),D’Amato(2009)andZammit(2001)allexplorethelegalinsanityplea,albeit
fromdifferentaspects.TheMaltesecourtcanonlycondemnapersontohavecommittedacrimeif
theyhave the intention tocommit thatact;hence if suchaction is committedbyapersonwho is
deemedashavinglegalinsanity,thecourtcannotcondemnthatperson.However,asCamilleriand
Zammitobserve,theMalteseCriminalCodedoesnotdefinewhatlegal insanityisandtheMaltese
Court often uses either that provided by Common Law or the definition provided by criminal
theorists, primarily thedefinition givenby the late SirAnthonyMamo“asdiseaseof themind”21.
Consequently,Maltahasoneof themostrestrictive interpretationof this legalconcept inEurope.
Hence, both Camilleri and Zammit argue for the introduction of the concept of “diminished
responsibility”tocaterforpersonswithmentalhealthproblemsorintellectualdisability.
18https://deputyprimeminister.gov.mt/en/mch/Pages/home.aspx19 The term ‘legal insanity’ is used with regards to exculpation due to mental health problems, where anindividualisnotheldcriminallyliableifthey‘unintentionally’commitacriminalact.Thisreasoningisthebasisofdefenceofcriminalinsanity(Camilleri,2017).20Chapter9oftheLawsofMalta:CriminalCode.Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=857421SirAnthonyMamo,MamoNotes1954,vol1,84
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Meanwhile, D’Amato (2009) argues that it is not possibile towholistically understand the
issues relating to criminal insanity without any appreciation of the medical perspective of the
subject, thus the law shouldmake use of medicine to understand / explain such behaviour. The
authorobserves thatgenerally threepsychiatrists areappointed toexamine theaccused’smental
capacity.Otherwitnesseslikehis/herrelativesandpeopleclosetotheaccusedarealsoexamined.
Ultimately, however, it is not the medical experts that decide the issue, but, as Camilleri (2017)
statesabove, it isuptothecourttodefine it.Therewerecases, liketheDegiorgioone22,where it
emergedthat theaccused,althoughhehadapersonalitydisorder,didnotmanifestanypsychotic
disorder.Thusalthoughhismentalcapacitieswerediminished,itwasnotsevereandthereforethe
lackof intentandvolitionalcapacitywasnotcomplete:heunderstoodhisconductandcouldhave
controlledandrefrainedhimselffromcommittingtheacts.
Zammit(2001),ontheotherhand,discussestheissueofconfinementofpersonsfound“not
guiltybyreasonofinsanity”toapsychiatrichospital,andexaminesalternativeapproachesinforeign
law. Themaindilemma surrounding the treatment of offenderswithmental disorders iswhether
they should be treated as “mad, bad, or both”, since they fall within the penal and psychiatric
systems, two systemswhichoftenhavediffering aims and functions.Among various issueswhich
Zammit explores, one argument is that those with severe forms of psycopathic personalities are
unlikelytobenefitfromanykindofmentalhospitaltreatment;andthatinmostcountriestheyare
cared for in specialhospitalsor specialunits inprisons.Moreover, theMalteseMentalHealthAct
states that if the accused is found to be insane at the time of the offence, s/he is to be kept in
custodyinahospital,“whetherornotheisinsaneatthetimeofthecriminalproceedings”.Zammit
alsoexplorestheconcernsarisingfromthefactthatsinceapersonisremandedtoMCHbyacourt
order, the Minister of Justice regulates certain aspects of his/her detention. The author thus
recommendsthatwhilethetestofinsanityshouldremainasis,thechainofconsequenceswhichare
producedbytheverdictshouldbeexamined,arguingthattheremightbeoffenderswhowerereally
insane at the time of commission of the offence but who are deterred from pleading insanity
because they prefer to be awarded a definite sentence than an indefinite stay at MCH. Other
recommendationsputforwardbyZammitarethat:
• theinsanitydefenceisraisedwithotherpreliminarypleas(thuseliminatingthepossibilityof
pleadinginsanityataverylatestageinthetrial);
• theinsanitypleabedecidedbythepresidingjudge(whowillbeaidedbyapsychiatricreport
ontheaccused),andnotbyajury;
22Ir-Repubblikata’Maltav.ChristopherDegiorgio(1997)
16
• theCourtshouldhavetheoptiontoorderthepersontodosomekindofcommunityservice,
andnotnecessarilyadmitthepersontoapsychiatrichospital.
Thusthereneedstobeamajorrethinkingofthewholesystem.
Depasquale (2005) explores a related concept to criminal insanity, that of “age and deaf
mutism”23, which are both grounds under which a person can be exempted from their criminal
punishment,orelsehavetheirpunishmentreduced.Inbothcategories,theMalteseCriminalCode
treatspersonsashavingadefect in their intellectual capacityanddevelopment; thereforeminors
under theageofnineareexempt fromanycriminal responsibility,whilst “deafmutes”under the
ageoffourteenenjoythesametreatment.Evenwhenthepersonwhois“deafmute”hasattained
theageoffourteen,theyarestillexempt,unlessthenecessary“mischievousdiscretion”(ħażen) is
proved:thereforethelawdoesnotpresumethata“deafmute”,ofanyage,iscapableofactingwith
mischievous discretion. Depasquale argues that the law should regulate society according to the
present time and age, taking into account all the advances achieved which have substantially
diminishedthegapofintellectualdevelopmentbetweenapersonwhoisdeafandapersonwhois
not. Depasquale also argues that while imprisonment should never be imposed on juveniles and
young offenders, it is of the utmost importance that such offenders are made aware of their
wrongdoingsandthedamagetheyinflictonsociety.Theauthorsuggestsvariouswaysinwhichthis
canbedone,including:theintroductionofopencentreswhichcaterforyoungoffenders(depending
ontheoffencecommittedandtheirrespectiveages);andthewiderapplicationof,asZammit(2001)
argues above, community service orders (particularly throughwork that remedies the harmdone
bothtosocietyasawholeortoaparticularperson/groupofpersons).Depasqualearguesthata
healthy juvenile justice system does not necessarily mean the total elimination of offending by
youngpersons, but ratherhavinganefficient andeffective system to tackle and rehabilitate such
offenders.
LegalCapacity
This section looks at different aspects of legal capacity which can affect disabled people’s lives,
includingtheEnduringPowerofAttorney(EPA),interdiction,andthespecialneedstrust.
The EPA was introduced under Maltese law in 2012, offering vulnerable adults having
mental difficulties because of old age and/or a disability, “an instrument of self-determined
substituteddecision-makingwhichbettersafeguardsthelatter’sautonomyandself-determination”.
This is explained by J. Attard (2017), who delves into the legislative background before the
23Theauthorofthedissertationrecognisesthatsociologistssaythatthetermisdegrading.However,thisisthetermusedintheMalteseCriminalCode(replacingtheterm“deafanddumb”).
17
introductionoftheEPA,theCivilCode24(whichregulatestheEPA)andvariouslegalconceptssuchas
substitutedandsupporteddecision-making(discussedinthe‘DisabilityRights&Non-Discrimination’
sub-section)whicharediscussedwithregardstotherelevantprovisionsfoundintheUNCRPD.The
study also includes a comparative studyof this subject coveredby various European jurisdictions,
andinternationalandregionalinstruments.J.Attardconcludesthat,underMalteselaw,theEPAis
governed by strict formalities. However, she proposes a number of measures to improve such
formalities so as to reduce asmuch as possible the chances of abuse against vulnerable people.
Theserecommendationsinclude:
• thecarefuldraftingofEPAs:whencreatinganEPA,careshouldbetakentoensurethatthe
legal document reflects themandator’s (the person onwhose behalf the EPA is created)
wishesandexpectations;
• stricter execution requirements that include a medical declaration procured within a
stipulatedtime-frame;
• theappointmentofjointmandatories:intheeventthatonemandatory(thepersonwhois
authorisedtoactonbehalfofthemandator)iseitherunabletotakeuptherole,resignsor
dies, the EPA terminates automatically. This problem could be addressed if joint
mandatoriesarenominated;
• privateandpublicsupervisionmechanisms;
• the development of a Code of Practice which provides guidance and examples of best
practicetobothpractitionersandcarersworkingwithvulnerableadults;and
• greaterawarenessofthebenefitsofEPAs.
Pace(2017)–lookingattheadministrationofpropertyofothersunderMalteseLawandthe
protection afforded to persons with disabilities – shows that this area contains fragmented
legislation, since relatedprovisionsare tobe found indifferentsectionsofMaltese laws; thusshe
recommends that these legal provisions are integrated. Furthermore, interdiction and
incapacitation, for example, follow the substituted decision-making system, asmentioned earlier.
However,Pacearguesthatnewmethods,suchastheEPA,canbefollowed.Shealsoanalysesforms
ofabuseanddiscussestheextentofprotectionthattheMaltese legalsystemoffers tovulnerable
adults(namelytheelderlyandpersonswithmentalorphysicaldisabilities) inthisarea, includinga
detailed analysis (together with a number of recommendations to improve it) of the Draft Bill
entitled the Protection of Vulnerable Older Persons and Adult Persons with Disability Act25. Pace
makestwomainrecommendationstoreducesuchabuseandtoprotectvulnerableindividuals:the
24Chapter16oftheLawsofMalta:CivilCode.Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=858025https://activeageing.gov.mt/en/Pages/Protection-of-Vulnerable-Older-Persons.aspx
18
introductionof anew legislation regulating this area; and that legal provisionsofferingprotective
measures to these vulnerable adults should entail the least possible restriction to their legal
capacity,thusbeingmoreinconformitywiththeUNCRPD.
Laferla(2009)notesthatwhilemostparentsofadisabledchildhaveundoubtedlythoughtof
howtheycouldprovidefortheneedsoftheirchildaftertheirdeath,theywouldprobablyresortto
the traditional solutions available under Maltese law, since they are still not familiar with the
mechanismofaspecialneedstrust.Oneexampleofa traditionalsolutionthatLaferlamentions is
thatduring their lifetime, theparentsof adisabledpersoncan seek the interdictionof their child
anddemandthatacuratorbeappointedtotakecareofhim/her.TheCourt,afterascertainingthe
conditionofthepersontobe inderdicted,verifyingthecircumstancesandbeingsatisfiedwiththe
need to interdict, issues a Decree of Interdiction and nominates a curator (usually the parents
themselves,siblingsorcloserelatives)totakecareoftheinterdictedperson.However,thecuratoris
hedgedwithrulesandrestrictions,mainlythosewhichbindthemtohaverecoursetothecourtand
obtainauthorisationfromthecourttodisposeof/dealwiththepropertyoftheinterdictedperson.
Anotheroption, thatof anoutrightbequeath toa child,willmost likely reduceorevendisqualify
themforsocialassistance.Parentsareoftenfacedwiththepossibilityofhavingtodisinheritachild
inordertopreservethechild’srighttoreceivesocialassistance.Todaythisproblemcanbesolved
bycreatinganeffectivefinancialplanforadisabledchild,andsuchplanmustallowtheprovidingof
all that thedisabledpersonneedswithout limitingtheperson’saccess to theavailablebenefits.A
special needs trust helps parents accomplish this goal. A trust is a legalmechanism set up by an
individual(thesettlor)creatingafiduciaryrelationship inwhichoneperson(thetrustee)holdsthe
titletothetrustestateortrustpropertyforthebenefitofanother(thebeneficiary).There is thus
theinteractionof3persons:thepersonsettingupthetrust,thepersonwhowillmanagethetrust,
andthepersonwhowillbenefitfromthetrust.Thepropertythatistobeputinatrustcanconsistof
anytypeofassets,includingrealestate,stocks,cash,bonds,mutualfundsorinsurancepolicies.This
choice leaves complete freedom for the parents to manouver without the need for court
intervention, and the trustee can act autonomously when s/hemanages and administers / deals
withthepropertyheldintrust.
BioethicsandGenetics
Whiletheprevioussectionlookedathumanrightsingeneral,thissectionlooksataspecificaspect
oflegalandmoralissuesrelatedtodisability:thatofgeneticsandtherelatedfieldofbioethics.This
importantissuehasbeenplacedinasectionofitsownduetoitsemergingandcontroversialnature
which might be lost in the larger field of human rights and discrimination. While the the topics
19
explored in thesedissertationsdonotdealwhollywithdisability inMalta, the issuesare still very
importanttothisfield.
Caruana (2017),Falzon (2014)andPiscopo(2014)explorethe legalandethical issueswith
regards to disability in light of new biotechnology advancements. Falzon’s and Piscopo’s
dissertationsdealwithcases(inEUmemberstatesandtheUnitedStates)of ‘wrongfulbirths’and
‘wrongful lives’, resulting fromsuchadvancementswhichhelppeoplenotonlyplan their families,
butalsofindoutwhethertheirunbornbabyisdisabledornot,havebabiesthroughartificialmeans,
andselectbetweenembryostodiscardthosedeemedlesshealthy.Thetwoauthorslookatlawsuits
broughtbyparentswhoclaimthattheyparentedachild(veryoftenadisabledone)duetohaving
been given the wrong advice or treatment before – or during – pregnancy, thus resulting in a
‘wrongful birth’; or by disabled people themselves claiming damages arguing that their ‘wrongful
lives’ were the result of negligence on the part of professionals and/or hospitals. Meanwhile,
Caruana looks at human genetic engineering and explores the possibility that therapeutic human
germline editing26 can end up discriminating against the rights of persons with disabilities as
declared in various international human rights legislation such as the UNCRPD. Caruana explores
germlineediting–whichcanmodifythegenomeoffuturegenerationstoproduce‘designerbabies’,
thus potentially eliminating disability – from the lenses of disability justice and ableism. She
discussestheapproachthatthistechnologyisundertaking,whichisgenerallymedical,abelist,and
possiblyeugenic.
BothFalzon(2014)andCaruana(2017)concludethatadvancementsinbiotecholongycanbe
discriminatorytowardsdisabledpeople.Relatedly,Piscopo(2014)recommendsthatMaltasignsthe
European Convention on Human Rights and Biomedicine (Oviedo Convention)27 which offers the
bestrecommendationsonhowtopromotetheprotectionofhumanrights inthebiomedical field.
Meanwhile, Falzon – analysing these issues from a Catholic moral perspective – argues that
existence can never be considered an injury, thus such cases are seen as devaluing the lives of
personswithdisability,especiallywhencourtsawardcompensationbecauseof‘wrongfulbirths’and
‘wrongful lives’. According to Falzon, the way society views disability has to continue to evolve
throughtime, justiceandhumannaturesothatsocietywilltrulystarttopromoteacultureof life.
Henotes that theabsenceofaclear regulatory framework in relation toprenatal testing inMalta
may be damaging in several ways. Caruana, meanwhile, suggests that potential discrimination in
26GermlinegenetherapyiswhentheDNAistransferredintoreproductivecells.Thisallowsforthecorrectionofdisease-causinggenesthatwillbepassedonfromgenerationtogeneration.https://www.yourgenome.org/debates/is-germline-gene-therapy-ethical27TreatyNo.164oftheCouncilofEurope:ConventionfortheprotectionofHumanRightsandDignityoftheHumanBeingwithregardtotheApplicationofBiologyandMedicine(1999).Availableat:https://www.coe.int/en/web/conventions/full-list/-/conventions/treaty/164
20
human germline editing is not automatic and can be prevented if this practice is well regulated,
utilisingthelegalconceptofjustifiablediscriminationthatallowsdifferentialtreatmentthroughthe
useof reasonableandobjective criteria. Theauthoralsodiscusses the importance that thepublic
becomesmoreawareofthevalidcontributionsthatpersonswithdisabilityoffersociety.Thiscanbe
bestdonebyinvolvingpersonswithdisabilityinthesediscussions,particularlyintheformulationof
theregulations.Theauthorrecommendsthattheseregulations:
• includethatthesemeasuresaretobeundertakeninitiallyonlytopreventdeath;
• includetheagreeddefinitionofthe‘seriousness’ofconditions;and
• state that these practices follow the WHO International Classification of Functioning,
DisabilityandHealth.
Caruana’s recommendations would prove evenmore beneficial when taking into account
CremonaCaruana’s(2016)study.CremonaCaruana(2016)looksatthevariousmodelsofdisability
proposedovertime,withthebiopsychosocialmodelbeingthepreferredoneatthetimeofwriting.
His dissertationdiscusses the stories of various disabledpeople found in literature and films, and
goesontodiscusstherelationshipbetweentheworkofdisabilityactivistsandbioethics(thestudy
of ethical issues in the fields of biology andmedicine), with special reference to transplants and
euthanasia.Herecommendsthatthetwoareasofbioethicsanddisabilityshouldshouldcompliment
eachotherandthatbioethicsshouldsupportpersonswithdisabilitytohavethebestqualityoflife
possible.Onewayofdoingthisisbyhavingbioethicsfocusontrainingprofessionalsworkinginthe
disabilityfieldtochangetheirapproachwhencaringforandtreatingtheirclientswithdisability,and
acknowledgethattheyhaveanactiveroletoplayratherthanremainingpassiverecipients.
21
LifeAreas
Education
Educationfordisabledstudentsisasubjectresearchedfrommultipleaspects,asseeninthissection.
Researchareasincludeinclusivepractices;learningsupportzones;studentswithdyslexia,Attention
Deficit Hyperactivity Disorder (ADHD), learning disabilities, Social, Emotional and Behavioural
Difficulties (SEBD), challenging behaviour, and high abilities; Inclusion Coordinators’ (INCOs) roles;
primary, secondary and tertiary education; the transition from secondary and post-secondary
educationtothenextstage;andsportineducation28.
StudentswithDyslexia
Briffa (2015) investigates literacy skills in nine year-old students with dyslexia in state schools in
MaltaandGozo.Interviewingalsotheirparentsandteachers,Briffaexploresthevariousdifficulties
thatareexperiencedbythesestudents,bothrelatedtoliteracyaswellastootherareasoflearning
and overall educational achievement. The research confirms that bilingualism increases the
educational difficulties encountered by these students. Research participants also express the
opinion that the curriculum is too heavy, and that too many changes within the curriculum are
happeningallatonce.Examinationsalsoincreasethepressureonallstakeholdersinvolved.Parents
andteachersfeelthattheyarenotconsultedenough.Trainingforbothparentsandteachersisalso
neededinordertohelptheirdyslexicstudents/children.Teachers,forexample,arenotawareof
relevantresourcesavailablefromtheEducationDepartment.Theimportanceofearlydiagnosisand
intervention, collaboration between the various professionals (including the complimentary
teachers), and parental involvement are also emphasised. It also emerges that the children with
dyslexia themselves prefer active involvement in learning rather than passively receiving
information, findingsthatareconfirmed instudieswithchildrenwithothertypesofdifficulties,as
seenintherestofthissection.
StudentswithADHD
Camilleri (2015) investigates theexperiencesof six sixteenyear-oldmale studentswithADHDand
their parents and finds that they experience school negatively. These students find it difficult to
engageinthelearningprocess,andfeelthatthereistoomuchemphasisonacademicsubjects.They
28Otherdissertationsdealingwitheducationand studentswithdisabilityexploreeducational interventions,ratherthansocialandenvironmentalfactors.Thus,whilebeingoftheutmostimportance,theyarenotdirectlyinlinewiththescopeofthisreviewandwerenotincluded.
22
also feel that theireffortsarenot recognisedandappreciatedenoughby their teachers.Relations
withschoolstaffaregenerallyreportedtobedifficult,althoughrelationswiththelearningsupport
educators (LSEs)29 tendtobebetterandcloser.However, someparticipantsexpress theviewthat
their LSE also hinders their social development. Thus Camilleri notes the importance of effective
classroommanagementandaflexiblecurriculumthatallowslessonstobemorestimulating,similar
tofindingsnotedinthe‘Dyslexia’and‘SEBD’sub-sections.Theparents,too,complainoftherigidity
of theeducationsystemwhichdoesnotpermitenough flexibility to let thesestudentsdevelop in
theirownway.Camillerirecommends:
• fostering a better understanding and collaboration between students, their parents and
schoolstaff;
• moreawarenessaboutADHD;
• more training on teachingmethods to address the learning styles of studentswith ADHD
(findingswhich emerge in relation to other types of disabilities, as noted throughout this
section);and
• theamendmentofexistingpolicies related tobehaviourmanagement, thecurriculumand
roles of school staff, in order to ensure that schools are truly inclusive to students with
ADHD.
StudentswithSEBD
Cefai(2009)analyseshowSEBDstudentsareincludedorexcludedintheMaltesestatemainstream
primaryclassrooms.Her researchshows thatanurturingand inclusiveschoolethoswouldhelp in
supportingboththeteachersaswellasthestudents.Cefaiputsforwardtheviewsofchildrenwith
SEBD,who,amongothersuggestions,expressthewish:
• ofnotbeingimmediatelyblamedbytheirteacherswhentheymisbehaveinclass;
• tobegivenextrahelpafterschool;
• tohavemoreindividualhelpinclass;
• tohavetheteachersimplifyingthelessons;
• to have more Personal and Social Development (PSD) lessons; and to move during the
lessons, as it is impossible for them to stay concentrated on tasks all day long without
moving (this links to Spiteri’s 2012 findings – discussed further below – on the role that
physicalactivityplaysinimprovingchildrenwithSEBD’sexperience).
Both Cefai and Camilleri (2012) –who examines the relationship between teachers and students
with SEBD in a secondary boys’ state school – talk about the role of teacherswith studentswith
29FormerlyknownasLSAs(LearningSupportAssistants).
23
SEBD.Camillerireportsthatteachers’attitudescanbeafactorininducingmisbehaviourandthatthe
studentswithSEBDparticipatinginherresearchfeelthatteachersprejudgethemwithouttakingthe
opportunitytofirstgettoknowthem(recallingCefai’sfindingsdiscussedearlier).BothCamilleriand
Cefai note that their research participants (teachers and students) feel that teachers lack the
knowledge,confidenceandmotivationtodealeffectivelywiththesestudentsandthattheFacultyof
Education30needs toadequately train its student-teachersonSEBD.Cefai also suggests that,with
theever-increasingnumberofSEBDstudents, localprimaryschoolsneed tohavespecificplansof
action on how to cope and deal with these students. Together with the plan of action, schools
shouldalsobeequippedwithapracticalbehaviourpolicy.Teachersshouldbegivenanactivesayin
thedevelopmentofthisplan.Cefaialsopointsouttheneedfor:
• thedevelopmentofadequatesyllabi;
• aninclusivepedagogy;
• effectiveteachingresources;
• effectivehumanresources;and
• a new approach to teaching and learning. This would include emotional literacy, an
intervention strategy which centres upon raising the pupils’ achievement as well as their
personalandsocialdevelopment.
CamillerialsonotesthatstudentswithSEBDarguefor:
• moreflexibleclassroommanagement;
• morepositiveprovisions(suchasprivatereprimands),ratherthanpunishments;
• caringteacher-studentrelationships;and
• learningandmentoringgroups.
Finally,Cefaialsosuggeststheuseofnurturegroups.
Theroleofthesenurturegroups(temporarytransitionalsettings–lastingfromonetofour
semesters – that prepare pupils with SEBD to cope better with the demand of mainstream
schooling)isexploredbyFenech(2012)andCutajar(2009).Inherdissertation,Cutajarimplements
and evaluates a Nurture Group programme to support two students with SEBD who live in a
residential home. The study reveals that both children improved in nearly all areas assessed, and
werereintegratedbackintomainstreamschool.Furthermore,thenurturegroupstaffleftapositive
impactonmainstream staff, in termsof adoptingmorenurturing approaches in their classrooms.
However, theauthornotes that thegroupdidnothaveall the characteristicsof anurture group,
whichreducedtheeffectivenessoftheprogrammeanddidnotallowthenurturegroupprogramme
to reach its full potential. The author recommends that a nurture group should comprise ten to
30https://www.um.edu.mt/educ
24
twelvestudentsandbelocatedwithinamainstreamschoolsettingsoastofaciltiatethechildren’s
reintegrationintothatschool.Additionally,Fenechreportsthatpartofthesuccessofnurturegroups
isduetotheinvolvementofmainstreamteachers,togetherwithgoodcommunicationbetweenthe
nurturegroupstaffandthemainstreamteachers.However,the latterexpresstheirdesiretohave
moretimewhichtheycandedicatetothesegroups.Throughherstudy,Fenechalsofindsthatthe
nurturegroupshelpthewholeschoolinbeingamorenurturingplaceforitsstudents.Fenechmakes
anumberofrecommendations,including:
• better communication between stakeholders involved in order to ensure continuity of
servicesprovidedandasmoothtransitionfrommainstreamclasstothenurturegroupand
viceversa;
• more support tomainstream class teacherswho should all benefit from the services of a
teachingassistantintheirclass,thusensuringthattheclassroomteacherhasmoretimethat
canbededicatedindividuallytotheirpupils;
• classeswithasmallernumberofpupils;and
• professionaltrainingofnurturegroupteachers.
Since parental involvement seems to be minimal in the schools that Fenech studies, she also
suggestsfurtherresearchtoseewhatiscausingsuchbarriers.
Camenzuli (2012), Grech (2012), Spiteri (2012) and Zahra Lehtonen (2012) explore other
avenuesofsupportingchildrenwithSEBD.LearningSupportZones(LSZ)areregularweeklysessions,
offeredoveronesemestertostudentswithSEBD,toprovidethemwithanopportunitytoimprove
their skills and engage more constructively in the classroom. Zahra Lehtonen investigates the
reintegrationofstudentsfromtheLSZbacktotheirclassroom.Takinganactionresearchapproach,
the author, herself a coordinator of one of these zones,manages the reintegration of eightmale
studentsofasecondaryschool.Sheidentifieseightmainfactorswhichcontributetothesuccessful
reintegrationofthesestudents:
• parentalsupport;
• therelationshipoftheLSZcoordinatorwiththeirstudents;
• thecontinuationofsupportbyotherteachers;
• aneffectiveLSZprogramme;
• thepreparationofstudentsfortransitionintoandoutofLSZ;
• evaluationofstudents’progressandreadiness;
• peersupportandrelationships;and
• fullsupportfromtheSchoolManagementTeam.
Theauthorrecommendsthatthereintegrationprogrammeofthesestudents:
25
• isgivenitsdueimportance;
• beincludedintheLSZGuidelines;
• andformsanintegralpartoftheprogrammeofeachstudentattendingthesezones.
AnotheravenuewhichcanbeexploredinordertosupportstudentswithSEBDistheCircle
of Friends, which Grech (2012) looks at in her dissertation. This programme also endeavours to
createasafeenvironmentwherinagroupofpeoplesupportapersonexperiencingexclusion(inthis
case,astudentwithSEBD).Grech,aPSDteacher, formedthisCircleofFriendsandfoundthatthe
disabledstudentimprovedbothhisself-conceptandhisself-esteem.Attheendoftheprogramme,
thestudent:
• managedhisbehaviourbetter;
• startedtooffersolutionstohisdifficulties;
• wasabletobuildnewrelationshipswithsomeofhispeers;and
• startedtobeincludedbyhispeersintheiractivities.
All the participants were able to better identify the positive qualities of the person they were
supporting. A program like Circle of Friends,which is tailoredmade for studentswho experience
neglectandexclusion,canbeausefultooltobeusedbytheteacher.
Camenzuli(2012)specificallyexploreshowtheuseofInquiry-BasedLearning(IBL)canhelp
studentswithSEBDbetterlearnMathematicsandreportshowtheresearchparticipants–boysina
Form 3 class of a church school – seem to enjoy and appreciate taking an active part in Maths
lessons,andexhibitnodeviantbehaviourduringtheselessons.ThisstudythusfoundthatIBLcanbe
ofbenefitwhenteachingMathstostudentswithSEBD:itseemstoexploit,ratherthaninhibit,SEBD
characteristics. Such benefits aremore pronouncedwhen IBL is utilised in a cooperative learning
envirnonment where students feel secure and work as a team. The author encourages Maths
teacherstoadoptIBLandrecommendsschoolstoincludeIBLintheirSchoolDevelopmentPlanand
Training.
Spiteri(2012),onhispart,looksattheeffectthatphysicalactivitycanhaveinimprovingthe
school experience of children with SEBD, which recalls Cefai’s (2009) findings described in the
beginning of this sub-section. Spiteri reports that his research participants (including the Sport
Promotion Unit staff, Physical Education teachers, class teachers and heads of school of primary
schools)believethatphysicalactivitycanhaveapositiveeffectonstudentswithSEBD.Theauthor
writes about the importance of educational practitioners being able to develop flexible school
policiesandpracticesbasedonthedesiresandneedsoftheirstudents.Thismeansthatifchildren
withSEBDarerespondingpositivelytophysicalactivities,suchactivitiesshouldbemaintained,ifnot
increased. The researchparticipants alsoemphasise that competitivephysical activities veryoften
26
are not suitable to these students as most of them find difficulty in coping with the negative
emotionsthatcompetitioncreates.Physicalactivitieshavetobewellplannedtoencourageeffortby
thestudents,goodsportsmanship,andthepossibilityofimprovingtheirperfomance.Theresearch
findsthatpositivereinforcement,rewardsystemsandactivitieswithshorttermtargetsaresuitable
tobeusedwithstudentswithSEBD.Thesestudentsalsofindthatphysicalactivityhelpsthemtouse
theirenergyinapositivemanner.
StudentswithSevereDisability
Abela(2012)reflectsupontheexperiencesofsocialinclusionorexclusionofboyswithmoderateto
severe disability attending secondary school, and finds that severe communication difficulties are
related to higher levels of exclusion by peers (a topic discussed in greater detail in the next sub-
section).Shesuggeststhatchildrenlikethefourboyssheobservesinherresearchshouldbetaught
howtointeract,andthatspeechisnottheonlymediumtowardssuccessfulcommunication:there
are gestures, signs, pictures and objects. Children need to be encouraged to explore alternative
means of communication. Assistive Technology (AT) – which is explored more in the section
‘Information and Computer-Based Technology’ – is another area that needs to be taken into
consideration:inthecaseofseverecommunicationdifficulties,ATcanmakeiteasierforchildrento
makethemselvesunderstood.
StudentswithHighAbility
Since the concept of inclusive education is linked to individual educational needs, it also includes
studentswithhighability(“giftedandtalentedstudents”).However,Maltesedevelopments inthis
areaarestillverylimited.ThisisthetopicofGhirxi’s(2012)dissertation,whoinvestigatesthesocial
and educational experiences of students with high ability as perceived by themselves and their
teachers.Shenotesthatthemoststrikingfindingfromherresearchisthehighmotivationofthese
students:theyareinquisitive,striveforexcellence,areawareoftheirstrenghts,areself-disciplined
andshowgreatpersistencewhenfacedwithchallengingtasks.Ghirxinotesthatthesestudentshave
high expectations for their future. She concludes that their educational and social needs require
attention inmainstreamclassesandthat if theyhavea facilitativeenvironment (includingsupport
fromparentsandteachers),theydowellbothsociallyandacademically.Theauthornotestheneed
for:
• furtherresearchinthisarea;
• theprovisionofadequatementoringandidentificationofunderachievers;
• theprovisionofopportunitiestotalentedstudentstoworkwithpeersofsimilarability;
27
• parents and teachers to have realistic expectations and give talented students the
opportunitytodecideforthemselves;
• trainingtoteachersongoodteachingtechniquesfortalentedstudents;and
• anationalpolicyontalentedstudents.
PerceptionsandAttitudestowardsStudentswithDisability
Whileperceptionsof,andattitudestowards,peoplewithdisabilityemergesinmultipledissertations
reviewedinothersections,twodissertationsdealspecificallywiththeseaspectsineducation.Borg
(2009) and Dimech (2007) explore these aspects with regards to primary and secondary school
students respectively. Borg, taking a sample of 4mainstream classes, finds that the studentwith
physicaldisabilitybutwithageappropriatecognitiveandsocialskillsishighlyacceptedbypeers.In
contrast,pupilswithdisabilitywholackageappropriatesocialskills,socialemotionalandintellectual
maturity–orhavebehaviourdifficulties–arerejectedorisolated,andhavealowersocialposition
thantheirpeers(confirmingAbela’s2012findingsdiscussedintheprevioussub-section).Theauthor
also notes that the climate in the class of the child with physical disability ismore inclusive and
providesmoreopportunities forthechildwith IndividualEducationalNeeds(IENs)torelatetoher
peers;whileintheotherclassesthereisevidenceofprejudiceagainstthosewhodonotsharethe
desirablecharacteristicsofintellectualabilityandsociability.Thus,Borgquestionsthebenefitsone
expectsfrommainstreamingofchildrenwithIENsinregularschools,sincethemainstreamingofthe
children in the study did not automatically improve their relationships. The findings of this
dissertation also show that teachers are not always in favour of inclusion; and that teachers’
viewpointsandattitudesarecriticalinguaranteeingthesuccessofinclusivepractices.
Dimech (2007), on the other hand, looks at a sample of boys in three secondary church
schools,eachofwhichhasadifferentexperienceof inclusion:thefirstonewasparticipating inan
‘Inclusion Programme’with a special school31 for disabled students; the secondonehad students
withdisability in their classes;while the thirdonehadno studentswithdisabilitypresent in their
classes.In-classinclusionisfoundtobemoreinfluentialthananInclusionProgramme(atleastinits
thencurrentform).Thetypeofcontactandtheseverityofthedisabilityalsoplayanimportantrole
in the formation of perceptions, attitudes and behaviour. In fact, the study finds that the
interviewees see themselvesmore as helpers of their partners at the special school, rather than
friends.Furthermore,thesamestudentshavereservationswhenitcomestointroducingtheirpeers
with disability to their circle of friends. Similar findings emerge with the group which had no
31SpecialschoolshavenowbecomeResourceCentres.Moreinformationcanbefoundhere:https://education.gov.mt/en/education/student-services/Pages/Special_Education/Resource%20Centres/Resource-Centres.aspx
28
studentswithdisabilitypresentintheirclasses.Thisimpliesthatthevisitstothespecialschooldid
not have the desired positive effects on the students in the first group. Their contact cannot be
described as realistic, since it only consisted of two visits during the scholastic year; while the
contactthatthesecondgroupexperiencedwasanintegralpartoftheschooltimetable,thatis,both
students with and without disability followed the same curricula (albeit with some slight
modifications in certain cases). Thus, since they had more time and could become much more
involvedinpurposefulactivities,thesecondgroup’sperceptions,attitudesandbehaviourstowards
their peers with disability were improved and reinforced. Furthermore, the way the Inclusion
Programme was being implemented brought disruption to the activities going on at the special
school (which then also resulted in challenging behaviour from the special school students,
renderingthevisitorsmorelostanduncomfortable)andtheparticipantsdidnotalwaysunderstand
whatwasgoingonduringthevisitstothespecialschool.Thespecialschoolteacherssuggestinviting
thewhole class of a studentwith a disability from themainstream to join him during his special
therapysessionsattheirschool(thiswasthenbeingcarriedouttoasmallextentatprimarylevel:
theysuggestthisshouldalsobedoneatsecondarylevel).Theauthorsuggeststheimplementation
ofaprogrammeinMaltathatwasimplementedinIreland,wherestudentswithseveretoprofound
disabilityparticipated in linkprogrammeswiththeirpeerswithoutdisability forawholescholastic
year,onceaweek,foractivities inarts,craftsandphysicaleducation.(Dimechnotesthatasimilar
programmewas in factalreadybeingusedbyaschool inGozo.)Finally,another ideaproposedby
oneoftheintervieweeswastoinvitestudentswithdisabilityfromthespecialschooltohisschool.
Theseexperienceswouldbebeneficialiftheybecomepartoftheregulartimetable,thuslayingthe
foundationsforaframeworkwhichwouldimproveinclusionandexcludesegregation.
TheRoleoftheINCO
Inclusive education is further explored by Tanti Rigos (2012), who looks at the role of the INCO
throughtracingthepaththatledtothe“birth”ofthisroleandtryingtoidentifyinwhoseinterests
she,asanINCO,continuestocarryoutobservations,judgementsandassessmentsonstudents.She
arguesthatthecreationoftheroleoftheINCO(justlikethewidermovementtowardsinclusionand
inclusive education) was not triggered by caring sentiments and disinterested efforts to help
disabledpeopleandstudents:rather,itwasbornoutofamuchwiderpoliticalprojectfueledbythe
needs of the economy. Evidence of this is the development of one syllabus for all students.
Nonetheless,theauthorarguesthattheINCOcanserveapositivepurpose,bothwithinschooland
within society.While the roleof the INCOmightbe“dangerous”because itpushes forward some
agendaofan institutionthathastakenthe leaddiscourse inthematter, itcanstillpromotea just
29
society, initially through practices of inclusion in schools which should later be disseminated to
societyatlarge.
TheTransitiontoSecondaryEducation
Borg (2012)explores the transitionofboyswith IENs fromprimary tosecondayschools.Exploring
the views of professionals, students and their respective parents / guardians, the author
recommends:
• moreindividualattentiontothesestudents;
• listeningtowhattheyhavetosay;
• moretrainingtoteachersinvolved;and
• awhole-schoolapproach.
Shealsoproposesasampleofaconceptualsocio-emotionallyliterateprogrammeforstudentswith
IENswhichwouldaddresssuchissuesas:
• thepeerpressureexertedonthesestudents;
• the difficulties encountered by these students when relating with their parents, their
teachersortheirfriends;
• thedifficultiesinlearning;
• theimportanceoffriendships;and
• how to tackle bullying, stress, anxiety and lack of self-esteem, and expressing themselves
abouttheirfeelings.
TheTransitiontoPost-SecondaryLifeandBeyond
Galea (2015) andMula Falzon (2012) explore the transition of students with learning disabilities
fromsecondaryandpost-secondaryschooltothenextstageoflife.Galearesearchesthistopicwith
regards to students who are eighteen years old and attend a Resource Centre, and finds that
students’aspirationsdiffer–beinghigher–tothoseoftheirparentsandeducators(afindingsimilar
toonesdiscussedinthe‘Children’section),indicatinganelementofoverprotection(athemewhich
is recurrent throughout other dissertations). However, the students interviewed identify their
parents as themain actors whowill be supporting them in finding employment.Meanwhile, the
Resource Centre offers these students vocational subjects such as ‘Independent Living Skills’ and
‘EmployabilitySkills’.Theauthormakesanumberofrecommendations,including:
• trainingtoparentsregardingoverprotection;
• moreinclusivepractices(suchaspeermentoringsystem)insecondaryschools;
• self-advocacytrainingtostudentswithlearningdisabilities;
30
• long term policies to guarantee a steady flow of services to promote the activation of
disabledpersonsintoemployment;
• moreinformationtostudentswithlearningdisabilitiesaboutthebenefitstheyareentitled
towhenemployed;
• moreawarenessandtrainingtoemployersontheseissues(whichis,onceagain,arecurrent
theme,furtherdiscussedinthe‘Employment’section);and
• wellplannedtransitionprogrammes.
Fortransitionprogrammestobesuccessful,MulaFalzon,whodevelopstransitionprogrammesfor
eightmale government secondary school students and their families, states that they have to be
student-centred, help the student to develop the necessary skills for self-determination and self-
advocacy,andshouldincludetrainingindailylivingandsocialskills.MulaFalzonfindsthat–during
the transition period from secondary school to post-secondary life – parents and students
experience emotions such as fear, worry, a degree of overprotectiveness and a sense of
helplessness. Parents demandmore accessible information in order to be in a better position to
make informed choices and support their offspring during this transition. Hence, the researcher
recommends the development of a comprehensive booklet containing information on available
services inthisarea, includingpost-secondarycoursesandtrainingschemes.Cooperationbetween
thedifferentprofessionalsinvolved(INCOs,guidanceteachers,collegecareeradvisors,teachersand
LSEs) is also emphasised. On a national level, the author calls for a national policy on the
developmentoftransitionplanningpractices, thusempoweringstudentsandtheir familiestoown
thetransitionprocess.
Pleven (2015) explores the experiences of eight peoplewith intellectual disability in their
post-secondaryyearsattendingtheMaltaCollegeofArts,Science&Technology(MCAST)32Pathway
toIndependentLivingProgramme33andtheKeySkillsforIndependentLivingCourseattheInstitute
ofTourismStudies (ITS)34.She findsthatmoremainstreampost-secondaryoptionsareneededfor
people with intellectual disability, as well as more awareness on the available post-secondary
options.Whiletheresearchparticipantsnotetheirpositiveexperiencesatthesetwoprogrammes,
someofthemencounteredsomechallengeswhentheystartedmoremainstreamcoursesatMCAST,
includingbullyinganddifficultyofcontent.Thisindicatesthatmoresupportisneededforstudents
with intellectual disability in mainstream courses in order to bridge the transition to more
mainstreamcoursesatMCAST.DisabilityawarenesstrainingforstudentsatMCASTandITSaswell
as teaching basic skills such as using public transport and self-advocacy skills to people with
32https://www.mcast.edu.mt33https://www.mcast.edu.mt/15434https://its.edu.mt
31
intellectual disability are also very important.With regards to the outcome of mainstream post-
secondaryeducation,mostparticipants remark that thecourses that they followedatMCASTand
ITShavefurtherpreparedthemforemployment.
TheUniversityExperience
Spiteri (2015) delves into the experience of three university (undergraduate and postgraduate)
studentswithphysicalandvisualdisability.Twoofthesethreestudentsdrivebutonlyoneuseshis
owntransporttogotouniversity,becauseofparkingproblems.Barrierstoinclusionexperiencedby
allthreestudentsarevarious,includingphysicalandattitudinalones,togetherwithlackofsufficient
support services. This study also shows that these students have to bemore resilient than their
peers to be able follow through their studies, thus increasing their stress levels. Although
experiencingadegreeofisolation,theyalsohavefriendswhoveryoftenservetofillinthegapsand
providethesupportneededbythesestudents.Theparticipantsarecriticalofthesupporttheyare
givenbytheauthoritiesasveryoftentheyarenotindividualisedenough,especiallywhenitcomes
toexams,timetablingandseatingfacilitiesinlecturerooms.Theauthorstronglyrecommends:
• moredisabilityawareness(arecurrentthemethroughoutdissertationsdiscussedinvarious
sections);
• theimplementationoftheprinciplesofUniversalDesign35(aconceptalsorecommendedby
dissertationsdiscussedinthe‘Leisure,CultureandSport’and‘Children’sections);
• bettersupportservices;and
• moreconsultationwiththestudentswithdisabilitythemselves.
Employment
Thesevendissertationsexploredinthissectionlookatdisabledpeople’semploymentinMalta,from
disabled people’s and employers’ perspectives. Four of them look at employment from the legal
aspect (other legal aspects related to disability are dealt with in the ‘Human Rights and Legal
Aspects’partofthereview);whiletheotherthreelookattheemploymentofpeoplewithphysical
and intellectual disability and the effectiveness or otherwise of the recently enforced quota
legislationsystem:the2%quotaofdisabledemployeesthatanemployerwhoemploys20peopleor
more has to employ. Thismeasure, introduced through the 1969Disabled Persons (Employment)
35MoreinformationontheUniversalDesignPrinciplescanbefoundhere:http://universaldesign.ie/What-is-Universal-Design/The-7-Principles
32
Act36,wasonlyenforcedin201537byintroducinganannualcontributionthatemployershavetopay
iftheyfailtomeetthisquota.
Inhisdissertation,Axisa (2018)conducts interviewswith tenMalteseemployers–coming
from different service industries in the private sector – who have disabled employees in their
workforce. Axisa reports that the disability quota in employment is still a grey area amongst
employers, with many unanswered questions, mixed feelings and misconceptions about persons
withdisabilityinemployment:whilealltheresearchparticipantsadmitthattheirknowldegeofthe
quota increased dramatically when the government decided to enforce it, most of them lack
detailed knowledge of it. Most of them do not have a specific policy regarding persons with
disability,withsomeevenquestioningitsneed.Manyexpresstheirconcernthattheyhavedisabled
employeeswhoarenotregisteredandhencetheydonotcountwhenitcomestoestablishingtheir
quota.Participantsalsoadmitthattheyreceivefinancialandotherhumansupport(mainlythrough
jobcoaches)torecruitdisabledemployees,butveryoftenthehumansupportisofashortduration
andthusnotenough.Ultimately,mostparticipantsarescepticalaboutenforcementandsomeeven
arguethatthecontributionwhichemployershavetopay if theydonotsatisfythequota issimply
anothergovernmenttax.Amongotherrecommendations,Axisarecommendsthatmoreresearchis
carriedoutonthissubject;whileoneoftheemployerssuggestsmoreawarenessandeducationto
employersontheseissues.
While Axisa looks at the employment of people with disability from the point of view of
employers, I.M. Zammit (2017) conducts interviewswith both people with physical disability and
alsowithHumanResourcesmanagers.Amongotherfindings,Zammitreportson:
• thestigmaanddiscriminationexperiencedbydisabledjobseekers;
• thelackofdisabilityawarenessofrecruiters;and
• thegenerallypositiveeffectthatthequotaenforcementsystemhasontherecruiters.
HisstudyalsoshowsthelackofaccessibilityinMalta(athemewhichemergesinotherdissertation
discussed throughout this review), together with other barriers, and concludes that Maltese
jobseekerswithaphysicaldisabilityhave lesschancesofbeingemployedwhencomparedtotheir
non-disabledpeers.Careerprogressionisalsoquiterare.Theauthorrecommendsthat:
• jobagenciesandrehabilitationcentresprovideeducationaboutthisarea;
• variousmediabeutilisedtoraisedisabilityawareness;
• youngpeoplewithdisabilitycontinuetobeeducatedinmainstreamsettings;
36Chapter210oftheLawsofMalta:PersonswithDisability(Employment)Act.Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=8718&l=137ActNo.XXIIof2015.Availableat:http://justiceservices.gov.mt/DownloadDocument.aspx?app=lp&itemid=26998&l=1
33
• employmentcentresensurethatpersonswithdisabilityarewellinformedregardingpolicies
andservicesavailableinthisarea;
• employersbeheldliableifinterviewvenuesarenotaccessible;
• legalassistancebeprovidedtoemployeeswithdisabilitywhofeelthattheydonotadvance
intheircareerduetotheirdisability;
• moreconsultationbyauthoritiesregardingtheemploymentquotasystemisheld;
• thereisbetterenforcementwithregardstoreasonableaccommodation;and
• advertsrelatedtothejobinterviewsareaccessibletoall.
A.Attard(2017)focusesherresearchonayoungmanwithintellectualdisabilityemployed
withalocalcompany,whilealsointerviewinghisparents,supervisor,colleagues,jobcoachandstaff
from an employment agency. The author likens the journey of employment to the experience of
ridingabicycle,whereoneremovesanyobstaclesthatmaycomeinthelearner’swayandcontinues
to support the individual until they are confident enough to let go and ride independently. The
author states that the way forward should focus more on incentivising employers to offer job
opportunities to persons with disability rather than penalising them for not conforming to
legislation. Findings from this studywere passed on to the Lino Spiteri Foundation38 in the belief
that,althoughthestoryoftheparticipantwithintellectualdisabilityinthisdissertationisunique,its
narrativecanhelpotherpersonswithintellectualdisabilitytofindandmaintainemployment.
Bonello (2015), Camilleri (2010), Zammit (2010) and Bezzina (2005) look at the legal
frameworksencompassingemploymentandpersonswithdisabilityinMalta(withCamilleritakinga
wider approach and looking at how the EU, includingMalta, tackles discrimination in the area of
employment). National and international legal precursors, and legislation subsequent to, the EU
CouncilDirective2000/78/EC39–consideredasthemostimportantinstrumenttheEUhasadopted
inthedisabilityfield–areexplored,aswellasthedirectiveitself,withbothitspositiveaspectsand
limitations. Malta adopted this Directive regarding the disability sector mainly through the EOA.
Camilleri and Bezzina both discuss, among other aspects, direct and indirect discrimination; and
Camillerialso looksatrelevantcasesattheEuropeanCourtofJustice40.CamilleriandZammitalso
discuss the proposal for a new horizontal anti-discrimination directive which has not yet
materialised.Throughinterviews,Zammit,corroboratingJ.Attard’s(2017)findingsdiscussedearlier
in this section, finds that enacting legislation is not sufficient in ensuring that disabled persons38http://linospiterifoundation.org39CouncilDirective2000/78/ECof27November2000establishingageneralframeworkforequaltreatmentinemploymentandoccupation.Availableat:https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=CELEX:32000L0078:en:HTML40https://europa.eu/european-union/about-eu/institutions-bodies/court-justice_en
34
achieve their right forequal treatment.Despitewriting ten years apart, bothBonello andBezzina
conclude– through interviews andanalysis of data – thatMaltesepersonswithdisability are still
findingvariousbarriers toaccess theMaltese labourmarket.Bonello reports that theseproblems
are furtheraccentuated in thecaseofpersonswith intellectualdisability,mentalhealthproblems
andolderpersonswithdisability.Reasonsinclude:
• lowlevelofeducation;
• lack of physical accessibility (especially transport) – corroborating I.M. Zammit’s (2017)
findingsmentionedearlierinthissection;and
• employers’negativeattitudes.
Thethreestudiesresultinvariousrecommendations,whichinclude:
• thedevelopmentofanEUdisability-specificdirective,protectingdisabledpeopleinallwalks
oflife;
• local legislation to be continuously updated to be fully complaint with European and
internationallegislation;
• thatthedefinitionofdisabilitybethesameindifferentlocallegislations;
• reinforcement of the access of disabled people to justice or conciliation procedures
regarding employment (recalling the general access to justice discussed in the ‘Disability
Rights&Non-Discrimination’sub-section);
• support to disabled persons so thatmore disabled persons can speak out for their rights
(confirmedalsobythefindingsinthe‘DisabilityMovement’sub-section);
• moreandbettervocationaltrainingandprofessionaltrainingofvocationaltrainers;
• further support to employers in providing equal treatment (including reasonable
accommodationandphysicalaccessibilityattheworkplace)todisabledpersons;
• amixtureof lawenforcementofexisting legislationandsoft law initiativestobeobserved
onavoluntarybasis;
• government-fundedschemes toencouragepersonswithdisability tomove fromsheltered
employmentintoopenemployment,ortobecomeself-employed;
• morestatefundingofNGOsworkinginthedisabilitysector;
• more consultation between all stakeholders (government, employers, unions and persons
withdisabilities);
• moreaccessiblepublictransport;
• statisticaldataonthissectortobegatheredandanalysedproperly;and
• moreawarenessraisinginallsectorsofsociety.
35
InformationandComputer-BasedTechnology
Debono (2006) brings to the fore the importance of making effective use of Information
CommunicationsTechnology(ICT)inordertosupportdisabledpeopleinbridgingthedigitaldivide.
Theauthorarguesthatthedigitaldividebetweendisabledandnon-disabledpeoplearisesbecause
disabledindividualsandthosewhosedecisionsbearondisabledpeople’s lifestyles,failtopercieve
theenablingqualitiesofICT.Despitethefactthathisdissertationwaswrittenmorethanadecade
ago, many of Debono’s observations are still valid today, such as the oft-cited fragmentation of
services (see the ‘Families’ section). In order to combat this, the author recommends that a
coordinating body should be set up. The author also recommends that government and private
enterprises cooperate indevelopingbetterpolicy and servicedelivery: a ‘joinedup’ approachhas
already proven to reduce the fragmentation that can create barriers to community participation
(examples include the intiative by Foundation for Information Technology Accesibility (FITA)41
together with (the then) Maltese Council of Arts and Technology, the Education Division, the
Ministry responsible for information technology and local commercial enterprises). Debono also
notes that removing thedigital divide is a cross-cutting issueandwill require leadership, funding,
and the involvement ofmajor business companies.He also recommends that policymakersmust
allowplansandprojectstoevolveorganicallyfromthepeopletheyaimtohelp,andprovidesupport
mechanisms to truly enable the development of sustainable projects. Furthermore, aggressive
awareness initiatives are needed to educate disabled persons who could benefit from assistive
technology, their familiesand friends, serviceproviders,and thepublicaboutassistive technology
available today. Finally, Debono recommends future research to substantiate the effectiveness of
theserecommendations inensuringthatMaltesedisabledpersonscanparticipateasfullmembers
ofsociety,andtoevaluatetheperspecitvesofotherstakeholderslikeserviceproviders,employers
andorganisationswhoseroleistosupportdisabledpersons.
DeMartino(2017)andGatt(2007)bothlookattheroletechnologyintheschoolexperience
(which is discussed in detail in the ‘Education’ section). Gatt explores communication through
technologyofchildrenwithlearningdisabilityandcomplexcommunicationdifficulties.Sheanalyses
thebarrierswhichpreventtheprovisionofofAugmentativeandAlternativeCommunication(AAC)
systems to these children. Through interviews with professionals – including speech and
occupational therapists and special education teachers– and familymembers, it emerges that, at
the timeof reporting,AAC inMaltawas still emergingandwas surroundedby lackof awareness,
inequalityofopportunityandprovision,negativeattitudesandlackoftrainingandfunding.Similar
to what Debono (2006) notes, Gatt also observes that territorialism prevails between different
41https://fitamalta.eu
36
governmentandnon-governmentorganisations,whereinteamsfunctioninamultdisciplinarysetup
whichlackssoundsupportservicesforAACusersandtheirfamilies.Gattnotesthattherealsoseems
to be remnants of the medical model, with funding opportunities for communication aids being
mainly charity based. Respondents in this study call for more collaboration between major
stakeholders and a person-centred approach towards service delivery. The author recommends,
amongothers,that:
• legislativemeasuresareputinplaceinordertoensurethattheEOAandtheEducationAct42
areinlinewiththeUNCRPD;
• anationalAACpolicybedevelopedtoprovideequalityofopportunity;
• AACusershaveaccesstoAACintheclassroom;
• manual signing and other means of communcation are introduced at National Curricular
level;and
• moreresearchiscarriedouttoanalysethebarrierstoactiveparticipation.
Gattsuggeststhatbysuccessfullyovercomingthesebarriers,thebenefitsofAACwillbeexperienced
bymoreMaltesestudentswithcomplexcommunicationdifficulties.
TechnologyfortheclassroomisalsoexploredbyDeMartino(2017),whonotesthatwhile
teachersneed tobeable tounderstandandempathisewith studentswithautism, theyareoften
unprepared for including an autistic student in their class because they cannot fully visualise the
experiencethatthestudentgoesthrough.DeMartinocreatesatool(anappthatcombineswitha
Virtual Reality (VR) headset) in order to enable teachers to experience the studentwith autism’s
experience.Usingnarrativesfromparentsofautisticchildrenaswellasexpertsinthefieldofautism
andlearningwithautism,herprojectfocusesonre-creatingtheclassroomexperienceasperceived
fromtheautisticlearner’sperceptionsthatincludesights,sounds,actionsandinteractions.
Diacono(2015),meanwhile,looksmorespecificallyatinternetaccessforpeoplewithvisual
impairments.Conductinghisresearchwithadults–themajorityofwhomidentifyastotallyblindor
having severe visual impairment and use computers regularly – Diacono observes that Braille’s
standingas theprincipalmeansof reading forpeoplewith visual impairmentshasbeen in steady
decline,whiletext-to-speechtechnologyhas thepotentialofbeinga learningcurve-freesourceof
thepublishedword.Theauthorrecommends,amongothers:
• aone-size-fits-allwebpagestructurefornewsportals;
• diffusionofgovernmentinformationandcommercialwebsite;and
• furtherresearchonrelatedissues.
42Chapter327oftheLawsofMalta:EducationAct.Availableat:http://www.justiceservices.gov.mt/DownloadDocument.aspx?app=lom&itemid=8801
37
Leisure,CultureandSport
This section looks at the often neglected (in research as in services) leisure and sport aspects of
disabled people’s lives in Malta. A recurrent theme emerging from most of the dissertations
discussed in this section is the importance of sport and activities such as performing arts in
challengingthemedicalmodel,which–ashasbeenestablishedfromprevioussections–isstillthe
predominantviewofdisabledpeopleinMalta.Thedissertationsalsolookatbarriersthatdisabled
peopleencounterinaccessingleisure,culturalandsportactivities,notonlyinpeople’sattitudes,but
alsointermsofphysicalaccessibility.
LeisureandCulture
L.Attard(2017)exploresphysicalaccessibilityasakeybarriertodisabledpeopleinMalta.Whileshe
looksmainlyataccessibility inplacesofentertainmentasexperiencedby sixyoungadultsusinga
wheelchair,her findingsand recommendationscanbegeneralised tomanydifferentplaces in the
Maltese islands (asseen inthe ‘Families’sectionbelow).Herstudyconfirmsthatwheelchairusers
experiencemanyobstacleswithregardstoaccessingentertainmentandleisureactivities,andthus
their opportunities to entertain themselves are substantially reduced, to the detriment of their
overall quality of life. Such restrictions end up influencing negatively their opportunities for
socialising with other (disabled and non-disabled) people, fostering new and possible significant
relationships, and improving their generalwell-being. Thismeans that inaccessibility is onemajor
issuewherethewheelchairuserpopulationisnotenjoyingthesamerightsasthoseenjoyedbythe
restoftheMaltesepopulation.This issuethusneedstobeaddressedmoreaggressively,andhere
theauthorrecommendsthatsociety implements theprinciplesofUniversalDesign–whichwould
benefitbothdisabledandnon-disabledpeople–andadisabilityawarenesscampaigntohelpsociety
graspabetterunderstandingofdisabilityissues.
AculturalactivityexploredbyBaldacchino(2016)isdancing.Shelooksatthedancedevising
process of ten young dancerswith learning disability at theOpeningDoors Association43. Besides
learningtodance,theseadultsarealsoabletoexpressthemselvesthroughmovementwithmusic,
emphasingtheir role in thiscreativeprocess.Suchanapproachchallengesvariousmisconceptions
aboutintellectualdisabilitieswhicharebasedonthemedicalmodelofdisability.Theseperformers
areveryeagertolearn,share,beinvolvedandexpresstheirownpersonality,emphasisingthatthey
needmorethanjusttherapeuticservicesthataddresstheirphysicalneeds.
43http://openingdoors.org.mt
38
Cini(2017)looksathowthreeboyswithsensoryprocessingdifficulitesviewandparticipate
inplayandleisureactivities.Themainleisureactivitiesoftheseboysarefootball,karateandjudo,
withotheractivities includingtheuseofcomputersandother technologicalequipment.Similar to
Psaila’s (2015) findings–discussed in the ‘Children’section–Cini findsvariances inchildren’sand
adults’ perceptions: while therapists view participation in these leisure activities as ideal for the
children’s sensory processing needs, children participate in play and leisure purely for enjoyment
and learning purposes. Families also tend to limit engagement in unstructured play such as in
playgrounds,oneof thereasonsbeingthe importancethatMaltesesocietygives toschoolingand
advancements in career.Anotherbarrier to thisparticipationare theattitudes (a recurring theme
throughout the majority of dissertations reviewed here) that these children face in these
environments. Cini recommends that children are listened to more, and that more awareness is
raisedabouttheneedsofthesechildrenamongstcoaches,teachersresponsibleforleisureactivities
andotherparents.Theauthortranslatedthesefindingsintotwoleaflets,oneaddressedtoparents
andtherapists,andtheothertoleisureentities.
Sport
Asnotedbyoneoftheauthorswhosedissertationisdiscussedinthissection,veryoftentheissueof
sport and persons with disability is not given its due importance (Mamo, 2017); and despite the
physical, social and pyschological health benefits that sport provides, Maltese persons with
disability’s participation in sport is extremely low (Cachia, 2017). The two dissertations discussed
here explore both the benefits of sport in disabled people’s lives, but also the the barriers
encounteredaswellasissuesrelatingtotheidentitiesofthedisabledathletes.
Cachia(2017)delvesintotheexperiencesoftwoswimmerswithaphysicaldisabilityandtwo
wheelchairbasketplayers, togetherwiththoseoftheirnon-disabledcoaches,andfindsthatthese
disabled athletes face a number of barriers,mostly due to the negative disability discourse used
within the personal tragedy andmedical model of disability still prevalent inMaltese society, as
confirmed by various other dissertations explored in this review. Other barriers are inaccessible
transport, poor planning of sporting activities, and limited financial resources. Interestingly, the
research participants have conflicting perceptions of disability: on one hand, sport activities help
these athletes develop a positive image of themselves – an aspect also noted byMamo (2017) -
enabling them to become role models (not only in sport but also in other spheres of life) and
disabilityadvocates.Ontheotherhand,successinsportactivitiesbringsaboutthefeelingofbeing
‘normal’.Indeed,theconceptof‘normalcy’isstilldominant,especiallyinthecoaches’attitudeswho
see their athletes as ‘normal’ persons.Mamo,who looksat the storyof a twelve-yearold female
39
withintellectualdisabilityparticipatinginsportingactivitiesbothinSpecialOlympicsandalsoinnon-
disabled mainstream competitive sport, also notes that the athlete questions her identity as a
disabled person. Mamo, too, notes the attitudes of coaches and other non-disabled persons in
power, who take on the attitude of “we know what is best”; while society’s negative attitudes
implies that the athlete can only succeed with other disabled athletes. The author ultimately
concludesthatalthoughhardwork,commitmentandresilienceareessentialforadisabledpersonto
succeedincompetitvesport,thiscouldnotmaterialisewithoutthesupportoftheparentsandthe
coaches. Meanwhile, Cachia recommends that sport programmes should be developed in
consultation with disabled athletes and their coaches; and that more promotion of these
programmesandsportawarenessiscarriedout.
IntimateRelationshipsandSexuality
Asnotedbytheresearchparticipantsofoneofthedissertationsdiscussedinthissection,beinginan
intimate relationship helps peoplewith disability satisfy other human needs, such as the need to
belongandtheneedtofeelemotionallyclosetoothers(Debattista,2015).
IntimaterelationshipsandsexualityarethethemesexploredbybothDebattista,mentioned
above, and E. Zammit (2017). While the latter looks at the experiences of adults with mild to
moderate intellectual disability, the former extends his research to people with physical, visual,
hearing, intellectual and learning impairments. Both studies find that people with disability face
obstacles in sexuality and intimate relationships (including sexualexpression). Theseobstaclesare
due to societal stigma and stereotypes and internalised ideas regarding disability and sexuality,
especially when it comes to people with intellectual disability. Both authors cite cultural and
religious beleifs, including stereotypical ideas of family life and marriage, as well as the tragedy
model of disability, as some of the barriers that disabled people face in this area. This is further
compounded by inaccessible (or lack of) information and sexual education, as well as lack of
preparation from parents and caregivers towards expressing sexuality and developing safe socio-
sexualrelationships.Otherfactorscitedbytheauthorsincludephysicalinaccessibility,lackofprivacy
andlackofopportunitiesforsocialinteraction.ZammitandDebattistarecommend:
• betterawarenessraisingactivitiesinvolvingtheactiveparticipationofpeoplewithdisability;
• education, easily accessible information (on sexuality and reproduction) and professional
supportforyoungadultswithdisability;and
• training and education for parents and professional caregivers so that they are well
equipped not only in supporting disabled people in expressing their sexuality, but also in
40
promoting sexual health and autonomy and eliminating overprotection (a theme which
comesout inmanydissertations, suchas those found in the ‘Educationand ‘Personswith
IntellectualDisability’sections).
Debattistaalsoproposes thereviewingof sexualeducationguidelines toensure thatpersonswith
disability are not shown negatively, together with a revision of legislation discrminating against
personswithdisabilitiesintheareaofmarriage.
41
Services
CommunityServices
AnevaluationofthecommunityservicesavailabletopersonswithdisabilitiesinMaltaiscarriedout
byVella(2017).Inherdissertation,VellainvestigateswhethertheservicesofferedbytheCommCare
Assessment Unit44 of the Active Ageing and Community Care Directorate45 are truly catering for
disabledserviceusers’needs.Usingbothqualitativeandquantitativemethods,theauthorfindsthat
serviceusersareonthewholesatisfiedwiththeoverallcareandthestandardsofserviceprovision.
However,twoimportantshortcomingsemerge:thefrequencyofserviceprovided(e.g.inthecaseof
physiotherapy,occupationaltherapyandhomehelpservice);andthetimingofcertainservicessuch
as nursing and care. Other issues noted by this study include the communication both between
professionalsandserviceusers(anaspectwhichalsocomesinthe‘ResidentialSettings’section),as
well as interdisciplinary communication; variousmisconceptions about these services; and, above
all, the need of continuity of care. The findings of Vella’s study thus show that there is room for
improvementinthedeliveryoftheseservices,bothatpolicyandthepracticallevels:specificneeds
ofthepersonswithdisabilityarenotalwaysbeingmet.Theauthorrecommendsthatare-evaluation
of these services is undertaken. The improvements that the study suggests do not only include
changes in the service provision itself, but also structural changes to eliminate external barriers
which are hindering people with disability from fully participating in their community. These
recommendationsincludetheintroductionof‘age-adaptedliving’–meaningcommunityresidential
houseswhichalso cater forolderpeoplewithdisability–anddeinstitutionalisation,meaning that
servicesshouldnotbeprovidedininstitutionsbutbecommunity-based.
ResidentialSettings
Darmanin(2014)explorestheexperiencesofadultswithintellectualdisabilityinresidentialsettings
inMalta,wheretheparticipantsexpressappreciationthattheyhavecontactwithmembersoftheir
families,withsomesayingtheymiss their families.Furthermore,sincemostof theparticipantsdo
not have friends outside the residential homes, they form strong friendshipswith other residents
andcarers(whilesomeofthosewhoareemployedalsosaytheyhavefriendsattheirplaceofwork).
Indeed,fewparticipantshavecontactwiththeoutsideworldandmostareconfinedtoparticipation
inactivitiesorganisedfordisabledpersons.Darmaninhighlightsthatsomeparticipantsfeelthatthey
are not listened to when they complain or make suggestions, and that they have difficulty44https://activeageing.gov.mt/en/Pages/CommCare-Unit/CommCare-Unit.aspx45https://activeageing.gov.mt/en/Pages/Welcome-Active-Ageing.aspx
42
communicating with foreign carers. Furthermore, only a few particpants say that they are
encouragedtoparticipate in theday-to-dayrunningof thehome,or in theadministrationof their
finances.Theauthorthusrecommendsthat:
• anevaluationofthepracticesusedinthesegrouphomesinordertoensurethattheneeds
andconcernsofresidentsaremetiscarriedout;
• guidelinesforgrouphomestoeliminatedisablingpracticiesaredrawnup;
• residentsparticipateincommunityactivities;and
• aconsultativecommittee foreachgrouphome issetup, tobechairedbyan independent
personandformedbyresidentsandstaff.
[Reviewer’sNote:Whilestandardsforresidentialservicesforpersonswithdisabilitywerepublished46
in2015 (after thewritingofDarmanin’sdissertation)and includedthesettingupofaconsultative
committeeforgrouphomes,thereisnolegalmechanismtoensurethattheyareadheredto.]
Dalli (2017),meanwhile, looksat theexperiencesofpeoplewhosespouseswithdementia
areadmitted intoacarehome.Themajorityof the researchparticipantsdidnot choose toadmit
their spouses – it was rather a decision taken by professionals – thus most of them were not
preparedforsuchamoveandexperiencedfeelingssuchasloneliness,emptiness,andhelplessness.
At the same time, however, they also experience relief from the stress caused by their spouses’
disabilities. The research participants also report their efforts tomaintain a connectionwith their
institutionalised lovedonesthroughcontinuedspousalcaring,despitethechallengesposedbythe
dementiaitself,physicalseparationandhealthcareprovision.Withregardstotheresidentialsetting,
albeitadifferentonethanthatexploredbyDarmanin(2014),Dallireportssomesimilarfindingsand
thusproposessomerecommendationswhichcutacrossboth typesof residential settings. Indeed,
Dalli reportsthatparticipantshavemixedopinionsonthefacility’scapacityto involvetheminthe
care of their beloved ones, with some complaining about the lack of communication between
participantsandstaff,andthehighturnoverofstaff.Otherstalkhighlyofthestaff’sattentiveness
anddiligenceandalsopraisethefacility’scommitmenttoprovidethemwithvariousopportunities
torelatewiththeirspouses.Theauthorendswithanumberofrecommendations,whichinclude:
• betterpreparationofthespouseonthedecisionstobetaken;
• bettercommunicationbetweenstaffandrelatives;
• moreemotionalsupportandcounselling;
• person-centredandrelational-centredcarefortheelderly;and
46Thesecanbefoundhere:https://family.gov.mt/en/DSWS/Pages/Disability/National-Standards-for-Residential-Services-for-Persons-with-Disabilities.aspx
43
• ongoingevaluationofcarehomes’regulationsandpolicies.
PsychologicalandCounsellingServices
Camilleri Zahra (2014) notes the need of counselling in disabled people’s lives and the fact that
disabled people as a client group are often avoided by counsellers. This section looks at the
counsellingprofession in relationtodisability fromvariousaspects, including ineducationsettings
(whileeducationingeneralisexploredinthesection‘Education’).
Camilleri Zahra (2014) finds that the social construction of disability among counsellors is
influenced by mainly three factors: international and national politics of disability; counsellors’
professional training; and cultures of practice. These result in contradictory disability discourse in
thecounsellingprofession,termedbytheauthoraslookingatdisabledpeopleas“allthesamebut
different.”Thecounsellorsparticipatinginherstudyfinddifficultyinexplainingtheirunderstanding
ofdisability,ontheonehandclaimingthatdisability isnot inherenttothe individualwhilstat the
same time claiming that it is the disabled person’s responsibility to overcome their impairments.
Despitetheirgoodintentions,theylackagraspofthenauncesofdisability.Onapositivenote,they
arereadytoreceivefurthertraininginthisarea.Theauthorconcludesthattheirtrainingdoesnot
match thedevelopments that tookplace in disability politics, and thus recommends thatMaltese
counsellorsreceivetrainingindisabilityissues.
Similarly,Portelli(2016),whoexplorestheexperiencesof–andspecificallythepsychosocial
effectsofdyslexiaon–youngadultswithdyslexiaandcounsellorsworkingwith secondary school
students, reports that his participants recommend that counsellors’ training should include
preparationondyslexia.Hisfindingsrevealfrustrationsduetotheenvironmentthatliving/working
with dyslexia provokes in both students and professionals. Research participants emphasise that
dyslexiacannotbeaddressed inavacuum: theperson’scontextandpersonalityare important;as
well as the fact that the counsellor’s role is not only related to the counselling room: advocacy,
educationandaproactiveapproacharerequired.Participantsalsorecommendthatcounsellorsare
activeatpolicyandadvocacylevelswithotherstakeholders.
The importance of psychologists in education settings with childrenwith disability is also
shownbyCortis(2014),whofindsthatthemajorityofprimaryschoolteachersparticipatinginher
studyandteachingstudentswithADHDinstate,churchand independentschoolsfeeltheneedto
consultthepsychologistwhenworkingwiththesestudents.However,veryfewofthemreportthat
such consultations actually occur. Cortis’ findings show that themajority of participating teachers
feel theneed formorepsychological serviceswithin their school. In tandemwithPortelli’s (2016)
recommendations,Cortis concludes that thepsychologicalprofessionneeds tobemoreproactive,
44
and recommends that psychologists promote more their roles and put more emphasis on
collaborativepracticeswithteachers.
Perera Vega (2014) confirms another of Camilleri Zahra’s (2014) observations: that
counsellors tendtoavoidpeoplewithdisability.She looksatcounsellingservices forchildrenwith
autismand finds that they tend toprefer creativeandnonverbalmodalities in therapy.Thestudy
highlights the importance of communication for effective therapy and the need to increase
counsellingservicesforbothchildrenandtheirfamilymembers(emphasisingthetheparents’need
foremotional support, asdiscussed in the ‘Parents’ sub-section).Group therapy is found tobeof
benefittobothchildrenwithautismandtotheirparents,helpingthemtorealisethattheyarenot
facing these challenges alone. (Similar findings are foundwith regards to siblings of childrenwith
disability,asdiscussedinthe‘Siblings’sub-section.)LikeCamilleriZahra’sstudy,thisstudynotesthe
need formore awareness on autism amongst counsellors and therapists. Bugeja (2014) too finds
thatcounsellingwithpeoplewithautismwouldbemorebeneficialifittakesanindividualapproach
that values difference, rather than the traditional arrangement.Meanwhile, she reports that the
professionals whom she interviews and who work with autistic clients view counselling autistic
clientsmoreasaformofcoaching/mentoring.
Counselling is also explored in relation to persons with physical disability by C. Farrugia
(2016).Acquiredphysicaldisability isdiscussed fromvariousaspects indifferent sections (see the
‘Families’ and ‘Youth’ sections), but Farrugia explores the experience of an amputation and its
impact on the self-identity of the person concerned. The author looks at various related issues
including:
• amputationasanemotionally-chargedexperience;
• issueswithcontrol;
• thetraumaticnatureoftheexperience;
• re-negotiationofidentity;
• theupsanddownsofadjusting;and
• theroleofprofessionals.
The role of resilience (which is discussed further in the ‘Families’ section) and the fact that the
experiences,whilehavingcommonalities,arealsoveryindividual(anotherrecurringtheme),emerge
fromFarrugia’sstudy.Withregardstheprocessofadjustment,theauthorconfirmsfindingsbyother
authorsdiscussedinthisreview,thatis,thatitisnothelpedbyattitudinalandphysicalbarriers.The
authorrecommends:
• moresocialawarenessondisability;
• thathealthisincludedasanareaofspecialisationinthetrainingofcounsellors;and
45
• thatcounsellorsareemployedwithinthehealthcaresetting.
46
StagesofLife
Children
Childrenwithdisabilityarethetopicofthetwodissertationsdealtwithinthissection(however,the
topic is also explored from other aspects in other sections, such as the ones on education and
leisure, culture and sport).While childrenwith disability are also the topic of disability studies in
general, there are specific issues which pertain solely to children and which merit much-needed
researchinthisregard.StudieslikethatofBartoli(2017)andPsaila(2015)enablechildren’svoices
andnarrativestoemergethroughtheirresearch.
Bartoli(2017)writesaboutthestoriesofthreeboyswithhighfunctioningADHDandautism
andidentifiesthemeaningofsuccessfulparticipationforthem,whichcomprises:
• afeelingofbelongingamongstfriends;
• beingabletoperformatasktoasatisfactorylevel;and
• havingadegreeofautonomyindifferentactivities.
All three children have positive experiences of inclusion; however, while social acceptance is the
mainaspectthatmakesthemfeel included, it isthesameattitudes(albeitnegativeones)thatare
considered by these children as themain barrier to inclusion. Ultimately, Bartoli, highlighting the
individuality of each child and the fact that “there is no single ‘most effective’ method for the
inclusionofallchildren,eventhosehavingsimilarimpairments”arguesforaneeds-basedapproach
which targetsa child’s specific requirementsand learning styles,whilst complimentingaUniversal
Designframework.Theauthoralsorecommends:
• collaborativegroup-basedlearningatschool;
• disabilityequalitytrainingbyorganisationsofdisabledpeople;and
• theinclusionofchildrenwithspecificimpairmentsinlocalsupportgroups.
Psaila (2015) narrates the story of a boy with spina bifida who uses a wheelchair, and
observes that the child’s outlook of life is more positive than that of the adults in his life. His
priorities differ from those of these adults and are very often overlooked: for him, the most
important things are physical accessibility; the freedom to identify himself as equal to his school
peers;andtoassumetheroleoftheeldestbrotherinthefamily.Ontheotherhand,theprioritiesof
theadultsinhislifearethathewalks,attendshisphysiotherapysessionsanddoeswellatschoolin
ordertocompensateforhisimpairment.Theinformationgeneratedthroughthisstudywasusedto
enablethechildtocreateabookletdepictingtheboy’s lifewhichcanbedisseminatedtoschools,
NGOsandother institutions. Inthisbooklet,thechildemphasisesthefrustrationhefeelswhenhe
encountersphysicalinaccessibility.
47
Youth
Three dissertations deal specifically with young persons with disability, albeit from different
perspectives.Garland(2015)looksattheimpactofthefamily,thechurchandthestateinMaltaon
young disabled people’s aspirations. Through interviewswith four young adultswith physical and
hearing impairments, parents, a politician and amember of the clergy, the study shows that the
formationoftheidentityoftheseyoungpeoplewithdisabilityaretheresultoftheirexperiencesin
education,theirfamilylifeandsocietyatlarge.Allofthemstrivetoachieveanon-disabledidentity–
whichdependsheavilyonapositiveeducationalexperience–withoutrefusingtheirdisabledone.
The parents,whose expectations for their children are high, report that they had to be assertive
(especiallywithmedicalprofessionals,whowererathernegativeaboutthefutureoftheirchildren).
Theparticipantsalsoassociatethechurchwiththeprevalentsocietalattitudetowardspersonswith
disability,thatis,thecharitableapproach;whileviewingthestateasbeinginstrumentalinproviding
the necessary support services to achieve independence, to enforce relevant legislation and to
achieveaccessibilitythatenablesthemtofullyparticipateinsociety.Theauthorthereforeconcludes
thatMaltesesociety, influencedbythefamily,thechurchandthestate, influencestheaspirations
held by young adults with disability. Finally, Garland makes a number of recommendations that
include:
• moreawarenessofservicesavailable;
• thedevelopmentofaChurchDisabilityPolicytomoveawayfromthecharitableapproachto
disability;[Reviewer’sNote:Itistobenotedthatthechurchhasadisabilitypolicy47whichis
currentlybeingupdated].
• consultation with disabled people by their representatives on the various Government
boards[Reviewer’sNote:ThisconcernhassincebeguntobeaddressedthroughActNo.VIIof
201548];
• betteraccessibilitytoculturalvenues;and
• incentivesfordeveloperstobuildnewhousingunitsthatarephysicallyaccessibletoall.
Given the influential role that the church plays in young disabled people’s lives inMalta,
DarmaninCarbonaro’s(2015)dissertationisrelevantinthatitstudiesthewaysinwhichpeoplewith
disabilitycanbefullyintegratedwithinparishesinMalta.FollowingtheMalteseDiocesanSynod,Id-
Dar tal-Providenza49 introduced the Special Religious Development (SPRED)50 method for its
47Arċidjoċesita’Malta(2006)LejnKnisjadejjemaktarinklużiva:is-sehemtal-persunib’diżabilitàfil-ħajjaul-ħidmatal-Knisja.Floriana,Malta:Arċidjoċesita’Malta.48ActNo.VIIof2015.Availableat:https://parlament.mt/media/37392/act-vii-various-laws-personswith-disability-membership-in-various-entities-act-2015.pdf49https://www.dartalprovidenza.org
48
residentsbutthisdidnotreachdisabledpeopleintheparishes.Theauthorrecommendsthesetting
upofanAdaptiveCatecheticalMinistrywithintheSecretariatforCatechesisintheMalteseDioceses
to supportparishes tobetter includepersonswithdisabilities and tobetterprepare them for the
Sacraments.
The relationship between people with disability, or their relatives, and professionals
mentionedbyGarland(2015)isathemewhichalsocomesoutindeBono’s2015dissertationonthe
livedexperiencesofyouthwhoacquireaphysical impairmentandhavetoadapt toanewwayof
life.Oneofthethemesthatemergeisthefactthattheparticipantsfeelthattheyaretheexperton
their experiences, rather than the professionals, and here they (especially those who had also
receivedhealthtreatmentabroad)alsocriticise localhealthservices.deBonoexploresthechanges
that were brought about in the participants’ lives: while they all worked towards becoming as
independentaspossibleandtoestablishasenseof‘normality’ intheirlives,anemergingthemeis
the great changes brought about in different aspects of their lives, including at home, in
employment, and in day-to-day activities. However, they felt that life had to go on, with their
relationships, their interests and their dreams. Among other themes the author explores, once
again, the issue of the negative views of disability by the public (discussed in various sections
throughout this review) comes out, although some express the view that these attitudes are
improvingwithtime.Basedontheseemergingthemes,theauthorrecommends:
• disabilityawarenesscampaignshighlightingthelivedrealityofdisabledpersons;
• lifeworld-led51servicesinthehealthsectorandotherareas;and
• betterstatisticaldataaboutdisabilityinMalta.
Families
Thedissertationsexploredinthe‘ResidentialSettings’section(andinothers)touchupontheroleof
relativesindisabledpeople’slives.Thissectionbringsoutmoreindetailtheexperiencesoffamilies,
parentsandsiblingsofpersonswithdisabilities.
FamiliesandCouples
The threedissertationsdiscussed in this sub-sectionexplore the resilienceof families andcouples
whohavememberswith various disabilities.However, the experiences of families of peoplewith
50https://www.dartalprovidenza.org/?p=666551AsdeBono(2015)explains,the“lifeworldiscomposedofbeingabodyinspace,aselfintimeandlivingwithothers.”Throughvariousrelatedstudies,theauthorexploresindividuals’lifeworldsbeforeandaftertheonsetofimpairment.
49
disability are also discussed in other sections, notably the ‘Persons with Mental Health Issues’
section.
Xerri (2017), exploring the experiences of a family with two disabled children (one with
physicalandonewith intellectualdisability),citestwomain importantthemesemanatingfromhis
study:thatofthelackofphysicalaccessibility(especially inhousing),whichoftenresults in lackof
inclusion; and the lack of cooperation between service providers (both governmental and non-
governmentalones),whichoften leads to framgentedand inacessible services.A recurrent theme
which emerges throughout different dissertations dicussed in this report (see, for example, the
‘DisabilityMovement’sub-sectionand‘IntimateRelationshipsandSexuality’section)istheconcept
ofpity towards these familiesandat the same time the lackof sensitivity towards theneedsand
feelingsofthedifferentfamilymembers.
Schembri Lia (2016; 2012), on the other hand, explores the resilience of several families
(2012)andheterosexualcouplesofwhomonemember(inthecaseofcouples,thefemalepartner)
has acquiredaphysical disability (2016). Inher first study, the author looks at theexperiencesof
differentmembersofthefamilieswhogothroughprocessessimilartobereavement(aconceptalso
noted by Bugeja (2014)who, as discussed in the ‘Psychological and Counselling Services’ section,
looksatautism), sometimesbeingoptimisticand finding thenecessary strength,while sometimes
finding their resilience withering. She reports that although there are similarities of experiences,
eachfamilyandeachmemberdevelopdifferentmethodstocopeasbestastheycan.Withregards
tocouples,SchembriLia (2016) reports thatcopingpost-disability isbroughtaboutbymutualand
reciprocal patterns of interaction initiated and maintained within the couple relationship but
influenced by the socio-cultural context. These processes, over time, limit the difficulties
experiencedbybothparties(Theissueofdealingwithacquiredphysicaldisabilityisalsodealtwith
in the ‘Youth’sectionandthe ‘Parents’sub-section,albeitmainly fromthepersonwithdisability’s
perspective.)
BothSchembriLia(2016;2012)andXerri(2017)makeanumberofrecommendationstobe
taken into account when providing services for families of people with disability. The former
emphasisestheneedformoreservices(includingpsychologicalones)thatarenotonlypersonalised
but also family-inclusive, in order to further the health and growth of the family as a whole.
MeanwhileXerrimakesanumberofpracticalrecommendationssuchas:
• the establishing of a keyworker as a point of reference to the family with children with
disabilitytocoordinateandaccesstherequiredservices;
50
• thepossibilityofgettingservicesfromdifferentorganisationsaccordingtotheneedsofthe
disabled child, rather thanbeing forcedwith a ‘bundle’ of services from the same service
provider;
• bettertrainingofpersonnelworkingwithdisabledchildrenandtheirfamilies;and
• astudytoensurebettercoordinationbetweenthedifferentserviceproviders.
Parents
As noted in the previous sub-section and also by the author (Mifsud, 2017) of one of the
dissertationsdiscussedhere,whenachildisdisabled,thewholefamilytendstobedisabledthrough
socialbarriers,negativeattitudesand theway theneededservicesaredelivered.This sub-section
linkstothepreviousoneinthatitlooksatspecificmembersoffamilieswhichincludepersonswith
disability,thatis,parents.Whileonedissertationlooksatparentswhoarethemselvesdisabled,the
other three dissertations look at the experiences of parents (sometimes having a disability
themselves)ofchildrenandadolescentswithdisability.
Gauci’s (2017) research explores the lived experiences of Maltese parents with Multiple
Sclerosis(MS),andexploressuchthemesas:
• theexperienceoflivingwithMS;
• parentingroles;
• childrenasablessing;
• concernsaroundthechildren’swellbeing;and
• theavailabilityofsupport.
Although some of the lived experiences of these parents are comparable, each experience – as
discussedbySchembriLia(2012)intheprevioussub-section–isuniqueinitsownway.Theresearch
participantsthemselves–likemanyresearchparticipantsinotherdissertations–recommend:
• betterpublicawarenesscampaignsbothwithregardstoMSspecificallyandtodisability in
general,inordertoimproveattitudestowardsdisabledpersons;
• addressingtherealitiesoflivingwithMS;
• developingthenecessarypolicies;and
• ensuringthatthespecificservicesneededbythesepersonsareavailable.
Mifsud (2017), looking at the experiences of parents (some of them having hearing
impairmentthemselves)ofchildrenwithhearingimpairments,findsthatwhileservicesdoexist,the
parentsemphasisethatitisdifficulttoaccessthemwithoutproperinformation.Furthermore,these
parentsrecognisetheimportanceofmeetingotherparentstodiscusstheseissuesandtofeelthat
51
theyarenotalone,henceanonlineparent-to-parentgroupwassetuptoprovideinformalsupport
totheseparents.Inaddition,parentsputforwardotherrecommendations:
• that children are diagnosed as early as possible in order to help children’s language and
socialdevelopment(the importanceofthediagnosisand itsrole inhelpingparentsfind“a
sense of closure” is also noted by Bugeja (2014), whose dissertation is discussed in the
‘PsychologicalandCounsellingServices’section);
• thathearingscreeningisintroducedtoallnewbornchildreninMaltaandGozo;
• thatprofessionalcounsellingbemadeavailabletoparentsofchildrenwhoarediagnosedas
havinganimpairment;
• thatservicecoordinatorsareengagedtoprovideparentswithunbiased informationabout
thevariousoptionsavailable,thushelpingparentsfeelmoreincontrolandempoweredto
makeinformedchoices;and
• thatanationalstrategyisdevelopedforthissectorinordertoensurethebestqualityoflife
tothesechildrenandtheirfamilies.
Finally,tomeetinformationneeds,parentsrecommendthepublicationofaleafletcontainingallthe
necessaryunbiasedinformationwhichcouldfacilitatethisprocess.Adraft leafletwasdrawnupas
partofthisdissertationandtheparticipantswereaskedtoevaluateit.[Reviewer’sNote:Theleaflet
withnecessaryinformationforparentsofnewlydiagnosedchildrenwithahearingimpairmentfound
inthisstudywaspublishedin2018.]
Dimech (2014) and Cassar (2014) both look at mothers of children with disability. While
Dimech compares mothers’ narratives following the birth of their disabled child across different
countries, including Malta, Cassar looks specifically at mothers’ constructions of their childrens’
autism.
Dimech (2014) discusses different themes that emerge from the mothers’ narratives,
including the upheaval that the birth brought about in their lives, and how they dealt with this
suddenchange.Otherthemesincludetherelationshipthesemothersexperiencewiththedifferent
medicalprofessionals (seeother sectionsdiscussing thisaspect, suchas the ‘Youth’, ‘Personswith
Mental Health Issues’, ‘Residential Settings’ and ‘Community Services’ sections), with other
membersoftheirfamilies,withmembersofsocietyatlarge,withthevariouseducationalinsitutions,
and with their offspring. Dimech’s study also brings out the way that specific norms (such as
‘perfection’ and ‘normality’) very often end upmarginising peoplewith disability and their family
members (recalling also the concept of ‘normality’ discussed in the ‘Sport’ sub-section). These
findingsarerelatedtoCassar’s(2014),whoreportsthatthemothers’firstcontact(relatedtotheir
52
childrenwithautism)iswithmedicalprofessionals.Atfirst,themotherspercievedtheirchildrenas
differentfromthe‘norm’,andlookedtothemedicalprofessiontogiveanameandsolutiontotheir
children’s autism. Thus diagnosis was followed by attempts to medically remove their sons’
difference,mainlythroughrehabilitationtherapies(aprocesswhichisconfirmedbyBugeja(2014)in
her dissertation on autism, discussed in the ‘Psychological and Counselling Services’ section).
Eventually, the mothers started embracing the social model of disability, acknowledging their
children’s personhood beyond their autism traits, and the fact that society discriminates against
thembecauseoftheirdisability.Theychallengetheconceptof‘normality’whilstworkingtoensure
thattheirchildren’srights,especiallyfortherequiredservices,aremet.
Siblings
Theoftenunheardvoicesandstoriesofsiblingsofpeoplewithdisabilityareexplored inthethree
dissertationsdiscussed in this sub-section.While twodissertations lookat adults siblings, another
oneexploreschildren’sexperiencesassiblings.
Vella Gera (2017) – who looks at children whose siblings have cerebral palsy, visual and
hearing impairments,DownSyndrome,autismandADHD–notes theuniqueconcernsandsibling
relationships of these children. Exploring the siblings’ variety of experiences and emotions (both
negativeandpositive, suchas resentment,pride,protection), theauthoremphasises theneed for
siblingstosharetheirexperiencesandtohaveaccesstoinformationandsupport.Indeed,VellaGera
writesaboutthesiblings’need:
• formoreknowledgeabouttheirsibling’simpairment;
• tosharetheirexperienceswithothersinasimilarsituation;and
• tohavemorecommunicationwith,andattentionfrom,theirparents.
Theauthorrecommendsthatsiblingssupportgroupsbeputinplace.
[Reviewer’s note:While Aġenzija Sapport52 provides sibling support groups for adult siblings; and
Equal Partners Foundation53 intermittently organises sibshops (a type of children’s sibling support
group),therestillseemstobeaneedformoresupport.]
The need for support, as well as the need for attention, from parents, also come out in
Cortis’ 2017dissertationwhich looks at adults siblingsofpeoplewith complexdependencyneeds
andMaidani’s2013onewhichalsolooksatadultssiblingsofpeoplewithdisability.Theparticipants
inCortis’studytalkaboutfindingalternativemeansofcommunicationwiththeirdisabledsibling,as
wellas–whilerecognisingtheneedfortheirparentstodedicatemoretimetotheirdisabledsibling
52https://sapport.gov.mt53http://www.equalpartners.org.mt
53
–moreattentionfromtheirparents.Asadults,theyfeelcomfortableaboutthefactthattheyhavea
disabledsibling,butthiswasnotsowhentheywereyoungandlongedfor‘normality’.Similartothe
findings in Vella Gera’s (2017) dissertation discussed above, the siblings also feel that they
developedanumberofpositiveattitudes(suchasbeingcaring,responsible, independentandself-
sufficient) due to their experiences. BothCortis andMaidani find that the experienceof having a
sibling with disability – while having common aspects (such as pride and embarassment) – also
differsaccordingtotheindividual(forexampleintermsoftheirinvolvementwiththecareoftheir
disabled sibling). Maidani emphasises the individuality of experiences both of siblings and other
familymembers,recallingSchembriLia’s(2012) findingsasdescribed inthe ‘FamiliesandCouples’
sub-section andGauci’s (2017) in the ‘Parents’ sub-section. Significantly, both Cortis andMaidani
report that participants feel a certain amount of responsibility and fear about the future of their
disabledsiblingaftertheirparents’death,anissuewhichtheydonotfeelmuchinvolvedindecision-
wise,andonetheyfinddifficulttodiscusswiththeirparents.Finally,theparticipantsexpresstheir
needforservices,especiallypsychologicalones(whichisemphasisedbybothSchembriLia’s(2012),
aswell asMifsud’s (2017)dissertationdiscussed in the ‘Parents’ sub-section),which they feel are
lacking.This confirmsVellaGera’sobservations that support services for siblings–whoultimately
alsosupporttheirdisabledsiblings–arelackinginMalta.
54
Impairments
TheDeafCommunity
Theexperiencesandneedsofparentsofchildrenwithhearing impairmentswerediscussed in the
‘Parents’ sub-sectionearlier. Thepresent sectionexplores the general experiencesof peoplewith
hearing impairments. Inher2017dissertation,Portelliexplorestheparticipation incommunity life
ofMalteseDeafadultswhouseMalteseSignLanguageasamainmodeofcommunicationandform
a Deaf micro-community within Maltese society. Portelli studies the participants’ aspirations for
theirfutureinMalta,bothonanindividuallevelandalsoasaculturalandlinguisticminoritygroup,
andconcludesthatDeafpeople inMaltaaremarginalised individuals facingvariousbarrierstofull
participationintheircommunities:suchbarriersarenotonlytoinformationandcommunicationbut
also include attitudinal ones. Portelli examines issues which Deaf adults encounter within their
family,among theirpeers,with theircolleaguesandwithinothersocial situations,aswellasDeaf
people’s involvement in areas like education, employment and service provision. The author also
delves into policies that impact on the involvement of Deaf people and argues that in order to
ensurethatDeafpeoplearefullyincluded,everymemberofsocietyneedstodohisorherpart.The
author’srecommendationsinclude:
• theuseofDeafadultsasrolemodelsforlanguagelearningandDeafidentity;
• professionalsupporttoparentsofDeafchildren;
• morequalifiedsignlanguageinterpreters;and
• moreaccessibleTVprogrammesthroughsub-titlesand/orsignlanguageinterpretation.
PersonswithIntellectualDisability
While intellectualdisability is lookedat fromdifferentpersepctives inothersections (see ‘Leisure,
Culture and Sport’ section), one dissertation (Bezzina, 2013) deals with people with (mild to
moderate) intellectual disability in general, while another (Darmanin, 2014) explores peoplewith
intellectualdisability’slivesspecificallyinresidentialservices.Duetotheimportanceofthistheme,
thelatterdissertationhasbeenplacedinaseparatesection(seethe‘ResidentialSettings’section).
However,somecommonsub-themesarefoundinbothdissertations, includingtherejectionof,or
non-identificationwith, the label of intellectual disability by someof the researchparticipants; as
wellasdifficultiesinaccessingandusingpublictransport.
The aim of Bezzina’s (2013) dissertation is two-fold: it explores the use of participatory
methodswith peoplewith intellectual disability, and seeks to investigate the impediments in the
livesofpeoplewithintellectualdisabilitywithregardstolivingindependently.Thetopic, identified
55
bytheresearchparticipants–whoaremembersofaself-advocacygroup–themselves,comprises
threemainaspects:
• control fromfamilymembers (athemewhichalsocomesout inMamo’s2017dissertation
exploredinthe‘Sport’sub-section);
• inaccessibilityofpublictransport(whichemergesasarecurrentthemethroughoutvarious
dissertationsexploredinthisreview);and
• engaginginromanticrelationships,marriageandparenting(athemeexploredinE.Zammit’s
(2017)dissertationreviewedinthe‘IntimateRelationshipsandSexuality’section).
Solutionstothesebarriers,brainstormedwiththeparticipantsthemselves,include:
• theself-advocacygroupholdingameetingwiththefamilymembers;
• teachingeachotherinapracticalmannerhowtomakeuseofpublictransport;
• communicatingmorewiththeirparentsabouttheirromanticrelationships;and
• makingotherpeoplemoreawareoftheirissuesasdisabledpeople.
Communication is the themecommon toall these solutions.Thedissertationalsoaffirms the fact
that the method used, participatory diagramming, is one favoured by the participants over
interviews (since they can express themselves more freely and collectively), as well as being
accessiblealsotonon-literateparticipants.
PersonswithMentalHealthIssues
Thissectionexploresmentalhealthissuesfromdifferentperspectives.Whiletwodissertationslook
atmentalhealthandhospitalisation;anotherthreelookatvariousmentalhealthaspects:antenatal
depression;mentalhealthdifficultiesexperiencedbycaregiversofthosewithdementia(whichalso
linkstothe‘Families’section);andatmindfulnessskillsforpeoplewithanxiety.
Throughherdissertation, ZammitSaid (2014)explores theexperiencesof six coupleswho
went through antenatal depression. The research participants talk of the perinatal period which
includes:
• feelingsofjoyandsadness;
• differencesbetweentheexperiencesandcopingstrategiesofmenandwomen;
• mothers’feelingsofbeingmisunderstood;
• feelingsofshameandofbeinginadequatemothers;
• inabilitytocope;
• feelingsofbeingjudged;and
• fearthatdepressionmightharmtheunbornchildandothersiblings.
56
The author reports that the couples tend to move toward co-parenting, although the marital
relationshipsveryoftenareputasideand result incouple strain, loneliness,maritaldiscordanda
senseofguiltycomplex.Thesituationtendstochangeafterthebirthofthechild,withthisperiod
oftendescribedby theparticipants as oneof adjustment and stress. Interestingly, the experience
withprofessionals isdescribedassometimesbeing facilitativeandatother timesashindering the
couples. Furthermore, the fathers feel that they are not supported enough during the perinatal
period. Thus, participants express the need for more awareness on the emotional and cognitive
aspects of pregnancy, and the need for consistency in the support offered during the postnatal
period.
Muscat (2015), meanwhile, attempts to discover whether caregivers of people with
dementia living in the community aremoreprone todevelopmental healthproblems. The larger
part of the sixty caregivers participating in this study are female, married and unemployed; and
whilenearlyhalfofthemarethespousesofthepersonswithdementia,a littlemorethan25%of
themarethedaughters.Theauthorreportsthatmorethanhalfofthecaregivershavemoderateto
severe anxiety, while 25% have moderate to severe depression. The findings demonstrate that
caregivers’ depression and anxiety differs among individuals, with the prevailing cause of stress
beingtheongoingburdenthatthecaregiversperceivewhencaringforarelativewithdementia.The
roleofprofessionals (andthe importanceof their listeningtotheserviceusersandtheircarers) is
once againmentionedhere (confirming findings such as Zammit Said’s (2014) describedearlier in
this section, aswell as those in the ‘Residential Settings’ and ‘Community Services’ sections). The
authoremphasisesthatitisessentialforcommunityprofessionalsandcareproviderstobeawareof
theadversitiesexperiencedbyboth thecaregiverand thecare-recipient inorder tosupport them
and facilitate accessibility to services that aid in easing psychological distress. Indeed, Muscat
recommends:
• thatcaregiversshouldbepartnersincareplanning;
• thatcaregiversshouldbeentitledforanassessmentoftheirneeds;
• moreinformationandtrainingtobeavailabletocaregivers;
• moresupportfromemployersofcaregivers
• betterfinancialsupporttocaregivers;
• theavailabilityofcaregiversupportgroups;and
• morerespiteservicesforpeoplewithdementia.
While counselling with people with disability is dealt with in a section of its own, one
dissertation (Zammit Cutajar, 2013) looks specifically at using mindulfness skills in counselling
personswhohaveanxiety.Herstudyisbasedonthelivedexperienceofaforty-yearoldwomanwho
57
hasanxietyandisamotherofayoungadultwithAsperger’sSyndrome.Heranxietyistheresultof
both having a disabled child and various other reasons (including issues from childhood). She
equatesanxietywithafearoverwhichshehasnocontrol.Byincorporatingmindfulnessintoherlife,
the participant was able to take a step back from her internal narrative and her negative
experiences, resulting in thepossibilityof seeinganddoing things inanewway,possiblyawhole
newwayofbeing.Thiscounsellingalsohelpshertofindhervoicewithoutunduefearofdispleasing
orangeringothers(whichhadpreviouslybeensourcesoffearforher).
MentalHealthandHospitalisation
L.Farrugia’s(2016)dissertationoutlinestheevolvingdevelopmentinthepsychiatricfieldduringthe
periodspanning fromthe1920stothe1960s.Whilethegreatestsingle factor that influencedthis
areawastheopeningofMountCarmelHospitalin1861whenpeoplewithmentalhealthproblems
startedbeinghopitalised;duringtheperiodthatFarrugiainvestigates,decentralisationcharacterised
the mental health care in Malta: patients were no longer institutionalised but were treated by
trainedpersonnel inpsychiatry.However,MCHwascriticisedasbeingoutdatedandovercrowded,
and the government tried,without success, to improve andbroaden the services provided at the
General Hospital. Notwithstanding, this hospital underwent constant progress in the services it
provided to persons with mental health problems. Treatments slowly moved away from the
traditionalones,introducingnewpsychiatrictherapiesinallareasincludingdiagnosis,categorisation
and treatment.Asdiagnosisbecamemore specialised, the categorisationofpsychiatric conditions
started to bemore complex and detailed. The treatments were based upon surgical procedures,
physicalmethods,restraints,pharmacologyandpsychology.Often,MCHlackedthenecessarystaff
andequipmenttoofferalltherequiredservices,suchasoccupationtherapyandelectroconvulsive
therapy.After thewar, other services started toevolve suchas theKennedyMemorial Clinic, the
Child Guidance Clinic, the Diagnostic Clinic and the Speech Therapy Clinic. Special schools, day
centresandresidentialhomeswerealsodeveloped.Althoughmanyof theseserviceswereunder-
resourced, theypromotedvariousadvances in the careofpeoplewithmentalhealthproblems in
Malta.Thevoluntarysectoralsohelpedinthisarea,emphasisingtheimportanceofhavingacaring,
albiet segregated, environment for people with mental health problems. It also tried to raise
awarenessontheseissuesandlobbiedthegovernmentformoreresourcesandtheintroductionof
legislationtosafeguardtherightsofthesepatients.Farrugiaconcludesthatoneofthemostevident
results of all these advances in the field of mental health in Malta during this period was the
decreaseof stigmaattached tomental illness.However,Galea (2017) states thatwhile nowadays
people with mental health problems are more accepted in society, their problems are still
58
consideredasatabooandtheyareoftenfacedwithstigma.Stigmaaffectsnegativelythequaltiyof
life of the persons concerned and leads to decreased employment opportunities, diminishes the
qualityofhealthcareandlimitsinteractionbetweenthepersonsandsociety.Theirfamilymembers,
meanwhile, indicatethat, rather thanexperiencingbarriers themselves, theyaremoreaffectedby
how others treat their relative withmental health issues. The author suggests that persons with
mental health problems should be included more in the workforce, an issue which is discussed
furtherinthe‘Employment’section.Additionally,furtheremancipatoryresearchneedstobecarried
out regarding services for the family members. Finally, she explores possibilities of reducing the
stigma attached to mental health problems, an issue which has been discussed by multiple
dissertations throughout this review andwhich affects peoplewith all types of disability. Galea’s
findings show that the transition of services from MCH to Mater Dei Hospital54 might be one
possibility that might decrease the stigmatising manner in which the public views mental health
problems; while the media can also be used to provide awareness and education about mental
healthissues.
54https://deputyprimeminister.gov.mt/en/MDH/Pages/Home.aspx
59
CONCLUSIONWhilethisreviewcomprisesdissertationswhichcoverawiderangeoftopicsrelatedtodisabilityand
disabled people’s lives in Malta, several recurrent themes, as noted in the text, emerge. These
themesarehighlightedhereinordertobringtotheforesomeofthemostpressingissuesaffecting
thelivedexperiencesofpeoplewithdisabilityandtheirfamilies.
Foremost in multiple findings is the fact that the charity-based model is still present in
different aspects of people with disability’s lives in Malta. This is seen through fundraising
campaigns, court decisions and public attitudes. Related to this, is the stigma and discrimination
whichpeoplewithdisability inMalta still face,another recurrent themeemerging throughout the
reviewinvariousaspectsofpeople’slives,includinginemployment,sport,andintimateandsexual
relationships. As expected, inaccessibility comes out as a barrier continuously faced by disabled
peopleintermsofphysicalaccessibility,accesstojustice,accesstoinformation,andbarriersposed
bytheabove-mentionednegativeattitudes.Asmostauthorsthusrecommend,thereisagreatneed
forawarenessraisingaswellastrainingtodifferentsegmentsofsocietyincludingthegeneralpublic,
parents (including in over-protection, especially of their children with intellectual disability),
employers,teachers(especially indealingwithstudentswithdifferenttypesofdifficulties),staff in
residentialsettings,andcounsellors.Withregardstotheeducationsystem,manyauthorsalsopoint
outtherigidityoftheeducationsystemandtheneedforaflexiblecurriculumandlessemphasison
examinations.Meanwhile,withregardstostaffofresidentialsettingsaswellasotherprofessionals
suchasmedicalones, theneedforbettercommunicationbetweenthemanddisabledpeopleand
theirrelativesisstronglyapparent.
Withregardstoservices,thegreatneedforsupport,includingpsychologicalsupporttoboth
individualswithdisabilityandtheirfamilies,isemphasised.Thereisalsoapersistentobservationby
severalauthorsregardingthefragmentationofservicesavailabletopeoplewithdisability,andthus
a call for cooperation between different entities. Authors also note the need for further legal
protection against discrimination, including in Malta’s Constitution and with regards to bringing
national legislation fully in line with the UNCRPD on issues such as supported decision-making.
Relatedly,theneedforinvolvingdisabledpeopleinpolicymakinganddecision-takingisevident.
Ultimately, the issues thatdisabledpeopleencounter in theirdaily livespoint towards the
need forastrongdisabilitymovement ledbydisabledpeople inMalta, thetopicdealtwith in the
beginningofthisreview.Withoutdetractinganyimportancefromtheemphasisontheindividuality
ofexperiencesofpeoplewithdisability–anobservationmadebynumerousauthorsinemphasising
theheterogeneityofthe‘group’ofdisabledpeople–theneedforacollectiveidentityisevidentin
combatingthediscriminationfacedbypeoplewithdisabilityinMalta.
60
ListofDissertationsAbela,M.(2012)TheSocialInclusionofStudentswithModeratetoSevereDisabilitiesinaBoys’ComprehensiveSecondarySchool:AQualitativeStudy(M.EdInclusionandIndividualEducationalNeeds)55Attard,A.(2017)PerspectivesontheEmploymentofPersonswithIntellectualDisabilities(M.A.DisabilityStudies)Attard,J.(2017)TheIntroductionoftheEnduringPowerofAttorneyUnderMalteseLaw–ACriticalandComparativeAnalysis(LL.D.)Attard,L.(2017)ExperiencesofwheelchairusersaccessingbuildingsofentertainmentfrequentedbyyoungadultsinMalta(M.A.DisabilityStudies)Axisa,T.(2018)TheEffectivenessofDisabilityQuotaswhenEmployingPersonswithDisabiliites:AnExploratoryStudyamongMalteseEmployers(M.A.YouthandCommunityDevelopmentStudies,DeMontfortUniversity)Azzopardi, A. (2000) Understanding Disability Politics in Malta: New Directions Explored (M.Ed.InclusiveEducation,UniversityofSheffield)Baldacchino, I. (2016) Devising Dance Performance with Adults with Learning Dis/abilities: Anexploraltionofdis/ability,danceandartistry,withspecialreferencetoOpeningDoorsdancegroup(M.A.PerformanceStudies(Dance))Bartoli, S.A. (2017) Living an Inclusive Life: Perceptions of Children with NeurodevelopmentalDisorders(M.A.DisabilityStudies)Bezzina,L.(2005)PersonswithDisabilitiesandEmployment:EqualTreatmentunderCouncilDirective2000/78/EC(M.A.HumanRightsandDemocratization)Bezzina, L. (2013)TakingdowntheWalls:ParticipatoryDiagrammingwithPeoplewith IntellectualDisabilities(M.A.ResearchMethods(HumanGeography),UniversityofDurham)Bezzina,R. (2015) InteragencyCollaboration?ACaseStudyon theNationalPolicyon theRightsofPersonswithDisability(M.A.PublicPolicy)Bonello, A.M. (2015) The Human Rights of Persons with Disability to Non-Discrimination in theMaltese Employment Sector: A Legal Perspective (M.A. Human Rights and Democratization ofGovernance)Borg,D.(2012)TheTransitiontoSecondaryEducationforBoyswithIndividualEducationalNeeds(M.Ed.InclusionandIndividualEducationalNeeds)
Borg,E.(2011)TheProtectionandPromotionoftheRightsofPersonswithDisabilities(LL.D.)
55WheretheUniversityisnotspecified,thismeansthatthedissertationwassubmittedtotheUniversityofMalta.
61
Borg,M.(2009)HowdoMainstreamPrimarySchoolChildrenwithoutDisabilitiesperceivetheInclusionofPeerswithDisabilities?(M.EdInclusionandIndividualEducationalNeeds)Briffa, A. (2015) Investigating Literacy Skills in Students with Dyslexia in Malta: Models ofIntervention,ImplicationsforTeachingandInclusion(M.A.DisabilityStudies)Brincat,M. (2014)AStudyof theGuardianship Legislationwith Emphasis on IntellectualDisability(LL.D.)Bugeja,R.M.(2014)Autism:DisorderorDifference?AlocalstudyontheperceptionsofprofessionalsworkingintheAutismField(M.A.TransculturalCounselling)Busuttil, B.A. (2017) Combatting Discrimination Based on Disability from a Substantive andInstitutionalPointofView(LL.D.)Cachia,D.(2017)DisabilityandSport:TheExperiencesofAthletesandtheirCoaches(M.A.DisabilityStudies)Camenzuli,J.(2012)Inquiry-BasedLearninginMathematics:TheCaseofStudentswithSEBD(M.EdinSocial,Emotional,BehaviouralDifficulties)Camilleri,C.(2010)ACriticalAnalysisofthevariousgroundofdiscrimination,theregulationthereofandECJJudgements(MagisterJuris(EuropeanandComparativeLaw))Camilleri, C. (2012) An Analysis of the United Nations Convention on the Rights of Persons withDisabilities and its influence on the European Union and Malta (M.A. Human Rights andDemocratization)Camilleri,M. (2015)Must I SitDown?AStudyof theExperiencesof SecondarySchoolMaleADHDStudents with regards to their Inclusion within the Inclusive Education System in Malta (M.A.DisabilityStudies)Camilleri,R.(2012)BridgingtheGap:SkillstoEnhancePositiveRelationshipsbetweenTeachersandStudentswithChallengingBehaviour(MastersinCounselling)Camilleri,R.(2017)RedefiningInsanity:BringingtheInsanityPleaintothe21stCentury(LL.D.)Camilleri Zahra, A.J. (2014) Enabling Counsellors: An Exploration of the Social Construction ofDisabilityamongMalteseCounsellors(M.A.DisabilityStudies,UniversityofLeeds)Cardona,G.C.(2007)JustlikeAnybodyElse?:Aninvestigationintotheoutlookofyoungempowereddisabledpeople living inMaltaonhow they view themselves, society andhow theymay interpretdisability(M.A.DisabilityStudies,UniversityofLeeds)Caruana, D. (2017) Does therapeutic human germline editing discriminate against persons withdisability?(LL.D.)Cassar,N.(2014)MalteseMothers’ConstructionoftheirSons’AutismSpectrumCondition(M.Psy.)Cefai,B.(2009)FactorsLeadingtoSocio-EmotionalandBehaviouralProblemswithintheFirstYearinthePrimaryClassroom(M.EdinSocial,Emotional,BehaviouralDifficulties)
62
Cini, M. (2017) Play and leisure environments as seen through the eyes of a child with sensoryprocessingdifficultiesandofsignificantothers:Reflectionsonneedsandproposalsforchange(M.A.DisabilityStudies)Cortis,A.(2017)TheLivedExperienceofAdultSiblingsofPersonswithComplexDependencyNeeds(M.A.DisabilityStudies)Cortis,L.(2014)WalkingtheTalkorActingasGatekeepers?ClassroomTeachers’PerceptionsoftheRoleofPsychologistsinSupportingPrimarySchoolChildrenwithADHD(M.Psy)CremonaCaruana,K.(2016)Disability:AnAgendaforBioethics(M.A.Bioethics)Cutajar,K.(2006)AnAnalysisoftheDisabilityConceptasTakenfromtheLegalPerspective(LL.D.)Cutajar, T. (2009) Breaking the Link Between a Poor Start in Life and a Dismal Future - HelpingChildren with SEBD in Malta through Nurture Groups: An Action Research Study (M.Ed in Social,Emotional,BehaviouralDifficulties)D’Amato,A.(2009)TheInterrelationBetweenLegalandClinicalInsanityinCriminalLaw(LL.D.)Dalli,M.G. (2017)The ImpactofAdmissionofaSpousewithDementia inaCareHomeonSpousalRelationships(M.A.GerontologyandGeriatrics)Darmanin, E. (2014) The Narratives ofMen andWomen Labelledwith Intellectual Disability, whoHave to Live in Residential Settings in Malta: A Thematic Analysis (M.Sc. Applied Psychology ofIntellectualDisabilities,UniversityofPortsmouth)DarmaninCarbonaro(2015)PeoplewithDisabilitiesandCatechesis:TheWayForward!(M.A.YouthMinistry)DeMartino,S.(2017)LivingAutism–AnImmersiveLearningExperience(M.F.A.inDigitalArts)Debattista, M. (2015) Persons with Disability and Intimate Relationships: Realities in theMalteseContext(M.A.DisabilityStudies)deBono,M.C.(2015)TheLivedExperienceofAcquiredPhyscialImpairmentinYouth(M.A.DisabilityStudies)Debono,S.M.(2006)ICTandDisability:BridgingtheDigitalDivide(M.B.A.(E-Business))Depasquale,E.(2005)AgeandDeafMutismasGroundsforExemptionandMitigationofPunishmentundertheMalteseCriminalCode:ATimeforSeriousReform?(LL.D.)Diacono, V. (2015) Internet Access for the Visually Impaired (M.A. Technical Communication,SheffieldHallamUniversity)Dimech, J. (2007)Non-disabledStudents’Perceptions,AttitudesandBehaviour towardsPeerswithDisability(M.Ed.InclusionandSpecialNeedsEducation)
63
Dimech, K. (2014) The Incoming of the Other: A Comparative Study of Published Narratives ofMothersofChildrenwithDisability(M.A.ComparativeEuro-MediterraneanEducationStudies)Ellul, S. (2015) From Exclusion to Inclusion: TheWay Forward under the NewMental Health Act(LL.D.)Falzon,C.(2014)WrongfulBirthandWrongfulLife:LegalandMoralIssues(M.A.Bioethics)Farrugia, C. (2016) The Impact of Lower Limb Amputation on Self-Identity: Implications for theCounsellingProfession(MastersinCounselling)Farrugia,L.(2016)MentalillnessandhospitalisationinMalta:1920s–1960s(M.A.History)Farrugia, M. (2015) Equal Recognition Before the Law and Access to Justice for Persons withIntellectual, Sensory and Psychosocial Disabilities: An analysis of the situation inMalta in light ofrecentDevelopments(LL.D.)Fenech, L. (2012) Nurture Groups for Pupils with SEBD: Inclusion or Exclusion? (M.Ed in Social,Emotional,BehaviouralDifficulties)Galea,F.(2015)GettingusReady:Thetransitionfromschooltocompetitiveemploymentforpersonswith learningdisabilities:parents’,students’andeducators’perspectives (M.Sc.AppliedPsychologyofIntellectualDisabilities,UniversityofPortsmouth)Galea,R. (2017)The livedexperiencesofpeoplewithmentalhealth illnessandthe impactontheirfamily(M.A.DisabilityStudies)Garland,R. (2015)The Impactof theFamily,ChurchandStateon theAspirationsofYoungPeoplewithDisabilityinMalta:ACulturalPerspective(M.A.DisabilityStudies)Gatt, M. (2007) Communication through Technology: Enabling Participation for Maltese ChildrenwithLearningDisabilities(M.Sc.,UniversityofManchester)Gatt,S.(2016)TheProhibitionofInhumanandDegradingTreatmentofPrisonerswithMentalHealthProblemsundertheECHR(LL.D.)Gauci, S. (2017) An Exploration of the Lived Experiences of Parents with Multiple Sclerosis (M.A.DisabilityStudies)Ghirxi, J. (2012) The Educational and Social Experiences of Students with High Ability: Emergingperceptionswithinsecondaryschoolsettings(M.Ed.InclusionandIndividualEducationalNeeds)Grech, A. (2012)Carrying out Circle of Friends – A Personal Reflection (M.Ed in Social, Emotional,BehaviouralDifficulties)Grech,J.(2017)HowwilltheConventionontheRightsofPersonswithDisabilities(anditsOptionalProtocol)affecttheRightsofPeoplewithDisabilities?(LL.D.)Laferla,M.(2009)SpecialNeedsTrust(LL.D.)
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Maidani,T.(2013)LivingwithDisability:ASociologicalInquiryoftheLivedExperiencesofAdultsWhoGrewupinExceptionalFamilies(M.A.(Prep.Course)inSociology)Mamo, D. (2017) Let me Win: Narrative of an Intellectually Disabled Person Participating inCompetitiveSport(M.A.DisabilityStudies)Mifsud,S.(2017)BeyondDiagnosisofHearingImpairment:ParentSupportandInformationinMalta(M.A.DisabilityStudies)MulaFalzon,C. (2012)Developing IndividualTransitionPlans–ATrainee INCO’sExperience (M.EdInclusionandIndividualEducationalNeeds)Muscat,M.(2015)Depression,AnxietyandQualityofLifeofCaregiversofIndividualswithDementiaLivingintheCommunityinMalta(M.A.GerontologyandGeriatrics)Pace,M.(2017)TheAdministrationofPropertyofOthersUnderMalteseLaw:Whatistheextentofprotectionaffordedtovulnerablepersons?Astudywithspecialemphasisontheelderlyandpersonswithdisabilities(LL.D.)PereraVega,L.(2014)SeeinganInvisbleChild:UsingDifferentTherapeuticModalitiesinCounsellingChildrenwithAutism(MastersinCounselling)Piscopo, A. (2014)Women and Prenatal Testing: New Medical Frontiers, New Legal Challenges(LL.D.)Pleven,L.(2015)TheOutcomesofMainstreamPost-SecondaryforPeoplewithIntellectualDisability(M.A.DisabilityStudies)Portelli, R. (2016)Beyond theB’s andD’s:ARetrospectiveNarrative on Secondary Schooling fromAdultswithDyslexiaandCounsellors(MastersinCounselling)Portelli,R. (2017)ListeningtoSilentStories:MalteseDeafPeople’sParticipation inCommunityLife(M.A.DisabilityStudies)Psaila,E.(2015)WelcometomyLife:AJourneythroughtheLifeofaChildwithaPhysicalDisability(M.A.DisabilityStudies)Pulis,L.A.(2001)DiscriminationandtheDisabledunderAct12000relativetoEqualOpportunities:AnAppraisal(LL.D.)SchembriLia,E.(2012)NotBrokenbutStrenghtened:StoriesofResiliencebyPersonswithAcquiredPhysicalDisabilityandtheirFamilies(M.Psy.(Clinical))SchembriLia,E. (2016)TheCoupleRelationshipwhentheFemalePartnerhasanAcquiredPhysicalDisability(MastersinFamilyTherapyandSystemicPractice)Spiteri,E.(2015)StudentswithaDisabilityattheUniversityofMalta:OpportunitiesandChallenges(M.A.AdultEducation)Spiteri, M. (2012) Improving Behaviour through Physical Activity (M.Ed in Social, Emotional,BehaviouralDifficulties)
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TantiRigos,C.(2012)“EverythingisDangerous”:AFoucaultianReadingoftheRoleoftheInclusionCoordinator(M.Ed.)Vella, C. (2017) An Evaluation of Community Services being offered to Persons with Disability inMalta(M.A.DisabilityStudies)VellaGera,J.(2017)TheExperiencesofSiblingsofDisabledChildren(M.A.DisabilityStudies)Xerri, F. (2017)How a Family with Two Disabled Children Experiences Societal Perceptions (M.A.DisabilityStudies)ZahraLehtonen,K.(2012)BacktoMainstream:ReintegratingstudentsfromLearningSupportZonesintothemainstreamsystem(M.Ed.)Zammit, A. (2010) The transposed employment directive, the forthcoming anti-discriminationdirectiveanddisabledpersons:Bringinglegislationfrompapertolife(M.A.EuropeanStudies)Zammit,C.(2001)Insanity:ACaseofPunishingtheMentallyIll?(LL.D.)Zammit,E. (2017)Whatare theagents thatcontribute to themissingaspectof sexuality inyoungpeoplewithmildtomoderateintellectualdisabilityinMalta?(M.A.FamilyStudies)Zammit, I.M. (2017) Experiencing the job interview process: Different perceptions by personswithphysicaldisabilityandHRmanagers(M.A.DisabilityStudies)Zammit Cutajar, F. (2013) Exploring the Magic Quarter Second: Using Mindfulness Skills incounsellingPersonsManagingAnxiety(M.A.TransculturalCounselling)ZammitSaid,A. (2014)AntenatalDepressionasExperiencedbytheCouple–ARetrospectiveStudy(M.Psy.(Clinical))