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Journal of Architectural and Planning Research

20:1 (Spring, 2003) 29

!"#R$!%!&A' BARRIERS A!

#SA#'#&*

David B. Gray

Mary Gould

Jerome E. Bickenbach

People with disabilities perceive the Americans

with Disabilities Act (ADA as le!islation thatmakes

buildin! access a civil ri!ht. "o others# the ADA

and associated !uidelines are seen as unnecessary

re!ulations that are costly and limit creativity.

$on%licts resultin! %rom attempts to comply with

minimal buildin! codes in assurin! access tobuildin!s stem# in part# %rom the buildin!

pro%essional&s

lack o% understandin! o% what people with

disabilities re!ard as barriers to their %idll

participation in

the built environment. "his study e'plores theviews on barriers and %acilitators to %ill

participation in

maor li%e activities %or people with disabilities

usin! %ocus !roups o% people with mobility

impairments# their si!ni%icant others# healthcare

pro%essionals# and built environment pro%essionals.


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"he results illustrate clear a!reement that social

institutions and attitudes can be important

barriers.

"he %ocus !roups di%%er in their assessment o% the

built environment as a %acilitator and barrier to

participation. Desi!ners# builders# buildin!

owners# payin! clients# and other intermediate

consumers

involved in construction mav learn %rom peoplewith disabilities. )or e'ample# end*users with

disabilities may be aware o% alternative solutions

to ADA codes that allow buildin! access without

ri!id adherence to !uidelines or codes. By

consultin! people with disabilities# desi!ners and

clientsmay learn how to determine what is needed and

what works %or access to and use o% buildin!

space.

+opright - 2003, 'oc.e Science Pu/lishing

+opan, #nc

+hicago, #', SA All Rights ReseredJournal of Architectural and Planning Research

20:1 (Spring, 2003) 30

INTRODUCTION

Access to the /uilt enironent for people 4ith

disa/ilities is re5uired as a ciil right / the


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Aericans 4ith isa/ilities Act (AA, 1990) As

4ith ipleenting other ciil rights legislation,

although the principle of e5ual treatent is clear,

the regulations and standards intended to help

reali6e the ideal do not proide the details needed

to resole pro/les in the /uilt enironent

Practical applied solutions coe fro .no4ledge,

and shared .no4ledge of accessi/ilit coes fro

interactions aong people 4ith disa/ilities,healthcare proiders, designers and planners, and

other

/uilding professionals Representaties of these

different sectors of our societ are /eginning to

pool

their .no4ledge to inent /uilt enironents thateet the legal regulations, /est use the s.ills of

designers and the /uilding industr, and proide

access for consuers 4ith disa/ilities &oo often,

ho4eer, attepts to eet accessi/ilit regulations

hae resulted in a profound lac. of fit /et4een the

ideals of an accessi/le /uilt enironent and 4hatis actuall /uilt for use / persons 4ith and

4ithout disa/ilities &his article reports seeral

points of ie4 a/out the relatie iportance of the

/uilt enironent copared to other

enironental factors as facilitators or /arriers to

participation


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in life actiities of people 4ho are o/ilit

liited

&he S +ensus (%c!eil, 1993) found that

appro7iatel 80 illion Aericans are una/le to

carr

out one or ore aor life actiities such as

plaing, attending school, 4or.ing, and selfcare

&he

!ational ;ealth #nterie4 Sure found 292< of=9= illion failies in the S hae one or ore

e/ers 4ith a disa/ling condition ('aPlante, et

al.# 199=) &his article 4ill focus on the 1>2

illion

Aericans 4ho hae phsical ipairents,

specificall those 4ho use deices (ie, canes,4al.ers, scooters, and 4heelchairs) to assist the

in oing a/out in their enironents ('aPlante,

et

al.# 1992)

BACKGROUND FOR CHANGE

&he traditional notions of disa/ilit are /eingchallenged / recent deelopents in social

polic,

research findings, and een in soe areas of

design (?ougerollas and @ra, 199) People 4ith


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disa/ilities hae fored an influential

sociopolitical group 4hose e/ers consider

uch of the /uilt

enironent to /e a /arrier to their participation in

actiities &he hae attac.ed these /arriers to

inclusion as other disadantaged groups in societ

hae challenged discriination /ased on race or

gender isa/ilit adocates hae /een a aor

force in haing legislation passed that eliinatesthese /arriers (;ahn, 198, 19, 199>B Cola,

198, 199) &he preise is that the effects of

an

disa/ling conditions can /e alleiated priaril

through the adoption of pu/lic la4s and policies

thatre5uire all /uildings to /e ade accessi/le (%ace,

et al.# 1991)

A !D PARADIGM

&he concept that the enironent can /e a co

e5ual factor contri/uting to disa/ilit has proided

theipetus for /roadening the scope of scientific

in5uiries of disa/ilit #n this ne4 paradig,

disa/ilities

are considered to /e the results of interactions

aong personal, /ioedical and functional

liitations,


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and enironental /arriers to participation

("er/rugge and Jette, 199>) &his assessent of

disa/ilit

re5uires that the traditional edical diagnosis /e

co/ined 4ith an ongoing ealuation of the social

and phsical enironental factors that shape the

e7perience of liing 4ith a disa/ilit (;ahn, 198,

1993a,/B %ace, et al.# 1991B 'a4, et al.# 199=B

ic.en/ach, 1993B Rae, et al.# 199=) Enablin! America (#$%, 199EB Pope and randt, 199E)

presents a odel that depicts the enironent as a

threediensional atri7 that supports or inhi/its

participation in actiities of people 4ith

disa/ilities

&he concept that enironental factors constitutean essential scientific coponent of disa/ilit has

led the Dorld ;ealth $rgani6ation (D;$) to

include enironental factors as part of its reised

classification instruent, the +nternational

$lassi%ication o% +mnpairments# Activities and

Participation, A Manual o% Dimensions o% Disablement and

-ealtl (#+#;2 eta $ne, D;$, 199E) #n this

docu I


20:1 (Spring, 2003) 31


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ent, the enironental factors are considered as

either facilitators or /arriers to participation for

persons 4ith ipairents or actiit liitations

&he Aericans 4ith isa/ilities Act proides a

/asis for going /eond siple copliance 4ith

inial

/uilding codes in assuring access to /uildings /

allo4ing designers to proide for e5uialent

facilitation of /uilding access ut in order toachiee e5uialent facilitation, designers, /uilders,

/uilding o4ners, and others inoled in

construction of the /uilt enironent hae had to

learn fro

the people affected / /uilding design People

4ith and 4ithout disa/ilities a hae differingie4s

of 4hat is needed for access to and use of /uilding

space

?ortunatel, the general principles of ho4 /est to

structure the /uilt enironent for a7ial use /

people 4ith and 4ithout disa/ilities hae eoledas soe architects and designers oe fro

/arrier

free design to uniersal design (ednar, 19EEB

$stroff and lacofano, 192B 'ifche6, 19EB %ace,


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et al.# 1991B Delch and $stroff, 1998) &his

/roadened approach is /ased on the preise that a

er

significant part of the enironentperson fit is

deterined / the design of the /uilt enironent

(Steinfeld, et. al.# 19E9B 'a4ton, 192) esigns

that do successfull e/od these principles hae

/een descri/ed as haing a uniersal design &o

.no4 4hat 4or.s /est for the greatest nu/er of people is the /asis of uniersal design Although

this general principle is clear, deterining

guidelines

that appl to specific cases reains a challenge

MOBILITY, DISABILITIES,

PARTICIPATION, AND ENVIRONMENTPROJECT (MIDPEP)

&he %o/ilit, isa/ilities, Participation, and

nironent Proect (%PP) at Dashington

niersit

in St 'ouis, %issouri (SA) is a threeear

research proect funded / the +enters for isease+ontrol and Preention &his proect is attepting

to discoer coon enironental /arriers and

facilitators to participation for o/ilitipaired

indiiduals &o accoplish this goal, a dnaic,


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interactie easureent sste is /eing

deeloped &he easureent sste 4ill consist

of three

assessent tools &he first 4ill coprise e7isting

easures of functional capacities of people 4ith

o/ilit liitations A second tool, the

Participation Sure of %o/ilit 'iited People,

has /een

deeloped to allo4 assessent of participation indail actiities &he third easure is a list of

enironental

/arriers and facilitators, the ?acilitators and

arriers Sure for %o/ilit 'iited People

Dhen the easureent sste is copleted,

changes in participation / people 4ith o/ilitipairents

a /e detected either 4hen their personal

capacit increases or after their enironent is

ade ore accessi/le,

METHODOLOGY

&he initial ethodologies eploed in thedeelopent of the Participation Sure of

%o/ilit

'iited People and the ?acilitators and arriers

Sure for %o/ilit 'iited People 4ere

5ualitatie:


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life histor interie4s, .e inforant interie4s,

and focus groups &hese ethods relied on the

input

of people 4ith o/ilit liitations, their

significant others, and professionals 4ho sere

the, including

health care and /uilt enironent professionals #n

addition, seeral e/ers of the research tea

4ho conducted the interie4s and focus groupsare o/ilit ipaired &he co/ined e7periences

of

these indiiduals contri/uted to a.ing possi/le

the 5ualitatie phase of the stud

SUBJECTS

&o deelop the easureent sste, input 4assought fro persons 4ith o/ilit liitations,

people

4hose lies are affected / persons 4ith o/ilit

liitations (significant others), those 4ho identif

o/ilit needs (phsicians and therapists), and,

finall, those 4ho pla a aor role in the creationof

the /uilt enironent (architects and planners)

Seenteen focus groups 4ere conened to discuss

the

concepts of participation and enironental

/arriers and facilitators (see &a/le 1) All the focus


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20:1 (Spring, 2003) 32

&A' 1 escription of focusgroup participants

?ocus@roup Participants %ale ?eale lac.

Dhite &otal

Mobility +mpaired (M+

Spinal +ord #nur = 0 1 / =

+ere/ral Pals 3 3 0 = =

%ultiple Sclerosis 1 E 0 Stro.e > > > >

Polio 3 9 0 12 12

%o/ilit #paired &otal 1E 23 / 38 >0

0i!ni%icant 1thers (01

Spinal +ord #nur 0 / 0 8 /

+ere/ral Pals 0 = 0 = =%ultiple Sclerosis 3 3 1 / =

Stro.e 1 > 2 3 /

Polio > = 1 9 10

Significant $thers &otal 2> > 2 32

-ealthcare Pro%essionals*

Participation (-$PPSpinal +ord #nur 2 E 0 9 9

+ere/ral Pals 2 = 0

%ultiple Sclerosis 0 / 0 8 8

Stro.e 2 = 1 E

Polio > 2 0 = =


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;ealthcare Professionals &otal (;+PP) 10 2= 1 38

3=

-ealthcare Pro%essionals - Environment (-$PE 1

/ 0 = =

Built Environment Pro%essionals (BEP 0 0

?ocus @roup Participant &otal >> E 10 112 122

groups lasted one to t4o hours each and 4ere

audiotaped ach group concluded 4ith a

suar /the noteta.er of aor points coered in /oth the

participation and enironent doains &hen, the

group 4as as.ed to add anthing that 4as

oerloo.ed in the discussion

?ifteen focus groups 4ere gathered to help

deelop the concept of participation for o/ilitipaired

people &he participants 4ere indiiduals 4ith

o/ilit ipairents: Spinal +ord #nur, Stro.e,

%ultiple Sclerosis, +ere/ral Pals, and Polio

Suriors All fie of these categories are referred

to asthe o/ilitipaired (%#) participants ?or each

of the fie o/ilitipaired groups, a focus

group

of significant others (S$) 4as fored, ainl

fro people related to the persons 4ith o/ilit

ipairents


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4ho participated in the o/ilitipaired focus

groups ?ie focus groups of healthcare

professionals 4ere fored to atch each o/ilit

ipairent group &hese fie focus groups are

referred to as ;ealthcare Professionals

Participation (;+PP) since the 5uestions

addressed in the

focus group sessions initiall addressed

participation of their o/ilitipaired patients orclients

(acrons appear on &a/les 2 and 3)

A second set of t4o focus groups 4as held to

e7aine enironental factors that are perceied

to /e

/arriers to or assist in participation / o/ilitipaired indiiduals, through the coents of

healthcare professionals representing arious

disciplines 4or.ing in healthcare enironents

(;+P)

and /uilding enironent professionals (P)

&he healthcare professionals 4ho coented onenironental

/arriers (;+P) included a social 4or.er,

occupational therapists, phsical therapists,

nurses, and a recreational therapist &he

participants in the /uilt enironent professional

(P)


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focus group included an interior designer, a

graphic designer, a contractor, a useu

superisor and

/uilder, a director of design and construction, an

architect, a landscape architect, a dura/le

e5uipent

representatie, and an eleator and lift designer


20:1 (Spring, 2003) 33&A' 2 Percentage of total coents on

participation / focus group

?ocus @roup

Participation +ategor %l S$ ;+PP ;+P P

Personal #ndependence 1E 19 1= 9 0

%o/ilit 1> 21 22 22 1>7change of #nforation 2 1 1 9 >3

#nterpersonal Relationships 13 = 13 22 0

$ccupation >9 80 >8 13 >3

conoic 'ife 0 3 0 22 0

+iic and +ounit 2 1 3 > 0

%# F %o/ilit #pairentS$ F Significant $ther

;+PP F ;ealthcare Professional - Participants

;+P F ;ealthcare Professional - nironent

P F uilt nironent Professionals

FOCUS GROUP PROCEDURES


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&he sae 5uestions 4ere as.ed of the first set of

18 focus groups the o/ilitipaired, significant

others, and healthcare professional participants

(%#, S$, and ;+PP) &hese 5uestions 4ere

designed to elicit the group e/ersG perceptions

of participation in aor life actiities / people

4ith o/ilit ipairents ach focus group had

a oderator, 4ho 4as a e/er of the proect

staff, and a noteta.er &he follo4ing openended5uestions 4ere as.ed: Dhat do ou (significant

other, patient) do in a tpical daH Dhat 4ould

ou (significant other, patient) li.e to do that ou

are

una/le to do no4H Dhat in the enironent .eeps

ou (significant other, patient) fro doing 4hatou 4ant to doH Dhat in the enironent 4ould

help ou (significant other, patient) do 4hat ou

4ant to doH

&he second set of t4o focus groups 4as held to

e7aine enironental factors that are perceied

to /e /arriers to or assist in participation / o/ilit

ipaired indiiduals, through the coents of

healthcare professionals representing arious

disciplines (;+P) and /uilding professionals

(P)


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&he follo4ing openended 5uestions 4ere used for

the focus group of healthcare professionals as.ed

a/out enironental /arriers (;+P): Dhat are

/arriers to and supports for engaging in life once

the

are dischargedH Dhat are inial supportsH Are

the /eing etH Dho is responsi/le for decreasing

these /arriersH Dho currentl pas or should pa

to reoe these /arriersH ;o4 do these /arriersipact our clientGs 5ualit of lifeH Dhat 4ould

our clients saH Iuestions as.ed of the /uilt

enironent

professionals (P) focus group included the

follo4ing: Dhat are the supports and /arriers

for people 4ith disa/ilities in the hoe and in thecounitH Dhat 4ould our clients saH o ou

.no4 4hat clients needH Dhat are /arriers to

proiding accessi/le designH o ou hae specific

re5uests for design eleentsH

RESULTS

?ocus group audiotapes 4ere transcri/ed and each4as anal6ed / at least t4o people A coding

sste 4as deeloped to count the nu/er of

coents ade during the focus groups that

referred


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to areas of participation, enironental

facilitators, and enironental /arriers &he

coding sste

addressed fre5uenc of ites, uni5ueness of ites,

and theesB the thees that eerged during

coding are discussed /elo4 &he coded coents

4ere then copiled into categories for

participation

and enironental factors &he total nu/er ofcoents ade / each group 4as calculated

and used as the denoinator in deterining the

percentage of coents ade that fit each

categor

All focus groups agreed that participation /

indiiduals 4ith o/ilit ipairents occurredost

fre5uentl in the categor of occupational pursuits

(leisure, 4or., education, and religion) ?or ost


20:1 (Spring, 2003) 3>

&A' 3 Percentage of enironental factorsreferred to as /arriers or facilitators / focus group

participants

?ocus @roups

%# %# S$ S$ ;+PP ;+PP ;+P ;+P P

P

nironental ?actors ? ? ? ? ?


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Products and &ools 10 3 = >3 / 2= 11 11 1 2>

Personal Support 13 2= 12 22 1= 3= 1> >> 3 0

Social #nstitutions 20 = 2> 1> 2 1= 22 3> 33 3

Sociocultural !ors 9 / 12 2 1> 3 19 0 28 0

uilt nironent 29 10 2> 9 1> 10 18 1 1 2 3

!atural nironent 2 0 3 0 1 0 3 0 0 0

Personal Attitudes = = 10 3 0 0 0 0

%ental ;ealth 2 0 > 0 2 1 0 0 0 0

$ther E 9 9 2 10 / 1= 1 10 0%# F %o/ilit #pairent

S$ F Significant $ther

;+PP F ;ealthcare Professional - Participation

;+P F ;ealthcare Professional - nironent

P F uilt nironent Professionals

F arrier ? F ?acilitator

focus groups, o/ilit (oing 4ithin and outside

hoe) and personal independence (personal

hgiene, dressing, and eating) 4ere entioned as

fre5uent actiities for people 4ith o/ilit

ipairents&he /uilt enironent professionals coented

ore on the iportance of e7changing inforation

aong the architects, planners, and contractors

than on the actiities of the persons 4ith

o/ilit ipairents (see &a/le 2)

BARRIERS AND FACILITATION


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#n &a/le 3, the coents ade during all 1E focus

groups regarding enironental factors are

copared

to illustrate the differences aong the groups in

ealuating the nine factors considered to /e

/arriers, facilitators, or /oth / #+#;2 (D;$,

199E) (see &a/le 3) ach of the o/ilitipaired

(%#), significant other (S$), and healthcare

professionals focus groups (including ;+PP and;+P)

includes the coents ade in the fie diagnostic

categories of o/ilit ipairents &he results of

the coparison of enironental factors as

/arriers or facilitators sho4 that /uilt enironent

professionals(P) are the onl group 4ho ran.ed the /uilt

enironent ore fre5uentl as a facilitator

than a /arrier &he o/ilitipaired and

significant other groups found the /uilt

enironent to /e

er significant /arriers to participation Products,tools, and personal support 4ere listed as

facilitators rather than /arriers to participation /

ost of the focus groups Social institutions and

social cultural nors 4ere considered

unaniousl as significant /arriers to

participation


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THEMYIES

+oents ade during the focus groups 4ere

reie4ed for thees a/out /arriers and facilitators

to

participation ?or e7aple, a thee that

characteri6ed the groups 4ith o/ilit liitations

4as that

people 4ith disa/ilities should /e consulted on

ho4 to adapt to the /uilt enironent Priate and personal housing designs and transportation

sstes eerged as iportant areas 4here input

fro

indiiduals 4ith o/ilit ipairents could

proide alua/le input 4hen designers, architects,

andcit planners are considering retrofitting or ne4

construction

&he /uilt enironent professional focus groups

ephasi6ed retrofitting e7isting phsical

enironents

as /arriers to their profession and er costlcopared to ne4 construction &he concept of

uniersal design 4as descri/ed in the groups of

/uiltenironent professionals as not realistic and


20:1 (Spring, 2003) 38


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ipossi/le to put into practice ?or e7aple, one

person said, K# donGt .no4 that there is al4as a

uniersal solution that is going to 4or. for

eer/odK &his group found legislatie

andates, codes,

and guidelines to /e restrictie and too often /ased

on one segent of the population - people 4ho

use 4heelchairs A /uiltenironent professional

stated, K# thin. the la4s hae /ecoe too focusedon 4heelchair accessK Soe e/ers of this

group e7pressed the opinion that codes and

guidelines

restrict their creatiit and Kta.e a4a the

challenges of the designer to coe up 4ith

intelligent

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