Disability Organizations in Europe Russell Olson David Penna Mairin Veith.

Disability Disability Organizations in Organizations in

EuropeEurope

Russell OlsonRussell Olson

David PennaDavid Penna

Mairin VeithMairin Veith

Research QuestionsResearch Questions

• How has the European disability How has the European disability movement become institutionalized? movement become institutionalized? Are there regional differences?Are there regional differences?

• Has this process impacted the tactics Has this process impacted the tactics these organizations use to influence these organizations use to influence government?government?

• Has this process impacted the Has this process impacted the relationship between group leaders relationship between group leaders and group members?and group members?

Research Questions, Research Questions, continuedcontinued

• How has this process been How has this process been influenced by events:influenced by events:– Within the movement?Within the movement?– Within the national political Within the national political

environment?environment?– Within the European political Within the European political

environment?environment?– That can be labeled “global stimuli”?That can be labeled “global stimuli”?

Background to the Background to the Movement: Important Movement: Important

Dates/EventsDates/Events• Pre-1900-Early 1900s: Most Pre-1900-Early 1900s: Most

Disability Organizations are Deaf or Disability Organizations are Deaf or Blind Organizations; some are Blind Organizations; some are established as charities, but most established as charities, but most are “are “ofof” organizations.” organizations.

• Post-WWI-Post-WWII: establishment Post-WWI-Post-WWII: establishment of national organizations for of national organizations for physically handicapped war veterans physically handicapped war veterans (WWI, WWII, Spanish Civil War).(WWI, WWII, Spanish Civil War).

Historical Background, Historical Background, ContinuedContinued

• 1950s, 1960s: Establishment of 1950s, 1960s: Establishment of increasing number of professional increasing number of professional societies based around diseases and societies based around diseases and conditions; these organizations conditions; these organizations frequently claim to speak for the frequently claim to speak for the disabled. Expansion of social security disabled. Expansion of social security supports in many countriessupports in many countries

• 1970s-1980s: Disability Protests often 1970s-1980s: Disability Protests often influenced by ILM in US/Canadainfluenced by ILM in US/Canada

Historical BackgroundHistorical Background

• 1980s, 1990s: Widespread 1980s, 1990s: Widespread establishment of organizations establishment of organizations controlled by people with disabilities controlled by people with disabilities (this happened much earlier in (this happened much earlier in certain countries.)certain countries.)

• 1990s/2000s: Disability 1990s/2000s: Disability organizations routinely consulted by organizations routinely consulted by governments concerning legislation governments concerning legislation impacting members. impacting members.

Background: Disability Background: Disability Movement IdeologyMovement Ideology

• Disability is related to an Disability is related to an individual's identity: it does not individual's identity: it does not need to be "fixed" any more than need to be "fixed" any more than a person's race or gender needs a person's race or gender needs to be "fixed".to be "fixed".– There is a collective consciousness There is a collective consciousness

among members.among members.– There are group boundaries.There are group boundaries.

Disability Ideology, Disability Ideology, cont’dcont’d

• Society has the responsibility to Society has the responsibility to remove handicapsremove handicaps – A handicap is an obstacle (in the A handicap is an obstacle (in the

nature of an interface) that nature of an interface) that prevents a person with a disability prevents a person with a disability from participating in society.from participating in society.

– Handicaps are socially constructed. Handicaps are socially constructed. They are culturally biased They are culturally biased assumptions about how individuals assumptions about how individuals should relate to society.should relate to society.

Disability Ideology, Disability Ideology, cont’dcont’d

• The accommodations that society The accommodations that society must afford individuals with a must afford individuals with a disability are in the nature of disability are in the nature of rights.rights. – A right to an education, means an A right to an education, means an

education appropriate to the education appropriate to the individual; a right to vote means individual; a right to vote means that a person must have access to that a person must have access to the polling place.the polling place.

Disability Ideology, Disability Ideology, Cont’dCont’d

• Disabled people are able to Disabled people are able to organize and represent themselves.organize and represent themselves.– Disability organizations should be Disability organizations should be

controlled by disabled individuals controlled by disabled individuals themselves.themselves.

– Disabled people are experts on their Disabled people are experts on their own situation and can best judge the own situation and can best judge the appropriate ways to remove obstacles appropriate ways to remove obstacles that prevent their participation in that prevent their participation in society.society.

MethodologyMethodology

• Over 4 years we conducted interviews Over 4 years we conducted interviews (more than 66) with disability (more than 66) with disability organizations.organizations.

• We collected written surveys from 103 We collected written surveys from 103 organizations.organizations.

• We also collected additional data from 31 We also collected additional data from 31 organizations from web pages and organizations from web pages and published literature for analysis on some published literature for analysis on some variables.variables.

• Total N= 160 organizations.Total N= 160 organizations.

Methodology, continuedMethodology, continued

• Countries within the EU where we Countries within the EU where we conducted interviews: UK, Ireland, conducted interviews: UK, Ireland, France, Germany, Netherlands, France, Germany, Netherlands, Belgium, Spain, Italy, Austria, Sweden Belgium, Spain, Italy, Austria, Sweden and Denmark.and Denmark.

• Travel and expenses were supported by Travel and expenses were supported by a GRI Priority Grant and the Department a GRI Priority Grant and the Department of Government and History. of Government and History. – (Thanks!)(Thanks!)

Findings: StructuresFindings: Structures

• Today there are several common Today there are several common organizational structures among organizational structures among disability organizations.disability organizations.– Local and or regional organizations of a Local and or regional organizations of a

particular disability constitute a national particular disability constitute a national association.association.• National associations typically have boards that National associations typically have boards that

provide representation to local organizations.provide representation to local organizations.• Alternately board members may be elected by Alternately board members may be elected by

the general membership. the general membership.


• Each country typically has a multi-Each country typically has a multi-disability national federation that disability national federation that represents all disability groups represents all disability groups – Almost all large disability organizations Almost all large disability organizations

belong to this umbrella group.belong to this umbrella group.– Board members typically represent the Board members typically represent the

larger organizations larger organizations – These organizations tend to work on a These organizations tend to work on a

limited number of issues and operate by limited number of issues and operate by consensus.consensus.


• Most national organizations also were Most national organizations also were members of European level organizations members of European level organizations for that disability, i.e. European Union of for that disability, i.e. European Union of the Deaf.the Deaf.

• National Umbrella Organizations were National Umbrella Organizations were members of the European Disability members of the European Disability Forum.Forum.

• Significance:Significance:– Improvement of Information sharingImprovement of Information sharing– Some action at EU levelSome action at EU level

Findings: Findings: ProfessionalizationProfessionalization

• More than 90% of the organizations in More than 90% of the organizations in our study had paid staff, their own office our study had paid staff, their own office space, bank accounts, and their own space, bank accounts, and their own office equipment.office equipment.

• A few new organizations were dependent A few new organizations were dependent on grants for almost all of their funding on grants for almost all of their funding and had uncertain futures.and had uncertain futures.

• Several organizations were wealthy Several organizations were wealthy enough to hire professional lobbyists or enough to hire professional lobbyists or managers full time.managers full time.

DemocratizationDemocratization

• Democratization was a major issue in Democratization was a major issue in the disability movement in the the disability movement in the formative period.formative period.– Democratization was taken to mean the Democratization was taken to mean the

control of the organizations control of the organizations forfor disabled disabled people people byby disabled people themselves. disabled people themselves.

– The European Disability Forum requires The European Disability Forum requires that member organizations have that member organizations have majority control by people with majority control by people with disabilities.disabilities.

DemocratizationDemocratization

• We also take democracy to mean that We also take democracy to mean that organizations are responsive to organizations are responsive to members. members. – The vast majority of organizations we The vast majority of organizations we

interviewed conducted periodic elections interviewed conducted periodic elections for board membership.for board membership.

– Regular contact with members was Regular contact with members was maintained through correspondence, e-maintained through correspondence, e-mail and newsletters as well as periodic mail and newsletters as well as periodic membership meetings and conventions.membership meetings and conventions.

Tactics for Influencing Tactics for Influencing GovernmentsGovernments

• Throughout Europe, most Throughout Europe, most organizations pursued insider tactics organizations pursued insider tactics such as lobbying, commenting on such as lobbying, commenting on legislation.legislation.

• Few organizations regularly pursued Few organizations regularly pursued outsider tactics such as use of the outsider tactics such as use of the courts or protests.courts or protests.

Results: Outsider TacticsResults: Outsider Tactics

• Almost 60% of organizations almost never Almost 60% of organizations almost never participated in protests.participated in protests.

actprotest -- How often does your organization ... participate in protests?

Freq. % Daily1) 1 1.1Monthly3) 5 5.4Quarterly4) 4 4.3Twice a yr5) 10 10.8annually6) 18 19.4alm never7) 55 59.1

TOTAL (N) 93 100.0

Missing 67

Results: Outsider tacticsResults: Outsider tactics

• Almost 85% of organizations said they Almost 85% of organizations said they almost never went to court.almost never went to court.

Freq. % Weekly 2) 2 2.4 Monthly 3) 5 6.0 Quarterly

4) 2 2.4 Twice a yr

5) 2 2.4 annually 6) 2 2.4 alm never

7) 70 84.3

TOTAL (N)

83 100.0

Missing 77

Results: Insider TacticsResults: Insider Tactics

• About 40% of organizations said they About 40% of organizations said they contacted government officials at least contacted government officials at least weekly; an additional 42% contacted weekly; an additional 42% contacted government officials at least quarterly.government officials at least quarterly.

actcongov -- How regularly does your organization ... contact governmentofficials?

Freq. % Daily1) 15 15.6Weekly2) 23 24.0Monthly3) 25 26.0Quarterly4) 16 16.7Twice a yr5) 7 7.3annually6) 3 3.1alm never7) 7 7.3

TOTAL (N) 96 100.0

Missing 64


• While 20% of organizations never spoke While 20% of organizations never spoke with legislators, almost 60% of with legislators, almost 60% of organizations spoke with legislators at organizations spoke with legislators at least quarterly.least quarterly.

actlegisl -- How often does your organization .... speak to legislators?


TOTAL (N) 94 100.0

Missing 66


• More than 60% of organizations More than 60% of organizations commented on legislation at least commented on legislation at least quarterly.quarterly.

actcomment -- How often does your organization ... comment on legislation?


TOTAL (N) 94 100.0

Missing 66

Analysis of tacticsAnalysis of tactics

• Many organizations admitted they Many organizations admitted they had come to rely on insider tactics had come to rely on insider tactics because they had become more because they had become more effective due to improved contacts effective due to improved contacts with the government. with the government.

• For many, outsider tactics entailed For many, outsider tactics entailed risks to government contracts for risks to government contracts for service provision and state funding service provision and state funding for the organizations themselves.for the organizations themselves.

Analysis of TacticsAnalysis of Tactics

• Organizations were surprisingly Organizations were surprisingly politically sophisticated for politically sophisticated for comparatively new organizations. comparatively new organizations. – Most recognized the value of Most recognized the value of

maintaining tactics with various maintaining tactics with various political parties, even ones that might political parties, even ones that might never form the government.never form the government.

CaveatsCaveats

• Some organizations admitted that they Some organizations admitted that they unofficially supported protests unofficially supported protests organized by other groups (or organized by other groups (or “spontaneous” protests) since staff “spontaneous” protests) since staff members attended protests in their members attended protests in their “private capacity. “private capacity.

• Many organizations indicated that Many organizations indicated that there may come a point where protests there may come a point where protests again become more significant.again become more significant.

Caveats, cont’dCaveats, cont’d

• It also seemed to us that in some It also seemed to us that in some situations interviewees downplayed situations interviewees downplayed their role in protests to “seem more their role in protests to “seem more professional.”professional.”

Success of Strategies: Success of Strategies: ResultsResults

• A Plurality of organizations felt that A Plurality of organizations felt that government was at least sometimes receptive government was at least sometimes receptive to their requests; more than 40% of the to their requests; more than 40% of the organizations felt that government was organizations felt that government was receptive most of the time or almost always.receptive most of the time or almost always.

Govrecept -- If you regularly contact government officials, to what extent doyou feel they are receptive to your requests?

1) Never Freq.: 1 1.0%

0

10

20

30

40

50

60

NeverRarely

SometimesMost of ti

alm always

Success of StrategiesSuccess of Strategies

• A large majority of organizations felt that A large majority of organizations felt that government was more positive now government was more positive now compared to five years ago about their compared to five years ago about their organization.organization.

Govattchan -- If you regularly contacted government officials five years ago, towhat extent has their attitude toward your group changed?1) they are more positive toward our group now.2) they are more negative toward our group now.

1) more + now Freq.: 81 82.7%

0

10

20

30

40

50

60

70

80

90

more + now more neg n no change

Summary of Other Summary of Other FindingsFindings

• Certain elements of the political structure Certain elements of the political structure seem to have influenced the rate of seem to have influenced the rate of development of disability organizations: development of disability organizations: countries with less democratic experience countries with less democratic experience (Spain, Portugal, and we assume Greece) (Spain, Portugal, and we assume Greece) developed independent organizations the developed independent organizations the latest; countries largely impacted by war latest; countries largely impacted by war had organizations develop late. Other had organizations develop late. Other countries had a strong charity influence. countries had a strong charity influence.

Other Findings, Other Findings, continuedcontinued

• Countries with strong federalist Countries with strong federalist structures/regional traditions (Germany, structures/regional traditions (Germany, Belgium) had weaker national Belgium) had weaker national organizations and stronger regional organizations and stronger regional organizations.organizations.

• France seemed to have a large number France seemed to have a large number of small national (and ephemeral) groups of small national (and ephemeral) groups (and a few large ones). Traditionally (and a few large ones). Traditionally French interest groups are organized French interest groups are organized around ideological parties.around ideological parties.

Other Findings, Other Findings, continuedcontinued

• There were no major differences in There were no major differences in level of professionalization level of professionalization regionally.regionally.

• While many groups admired the While many groups admired the US’s ADA, they saw it as US’s ADA, they saw it as inappropriate to their political/legal inappropriate to their political/legal system.system.

Other Findings, Other Findings, ContinuedContinued

• Technology has presented significant Technology has presented significant opportunities for the disability opportunities for the disability community (internet communication, community (internet communication, accessibility devices, etc.) but also accessibility devices, etc.) but also significant challenges (cochlear significant challenges (cochlear implants, pre-natal testing, inaccessible implants, pre-natal testing, inaccessible technology, etc.).technology, etc.).

• Public attitudes toward disability have Public attitudes toward disability have improved significantly but are far from improved significantly but are far from ideal.ideal.

Availability of findingsAvailability of findings

• Most of these findings are developed Most of these findings are developed in several conference papers listed in several conference papers listed on the next slide. Contact on the next slide. Contact [email protected]@gallaudet.edu for an for an electronic version.electronic version.

List of Conference List of Conference PapersPapers

• 2005: (Nov.) “European Disability Policy 2005: (Nov.) “European Disability Policy Networks in Comparative Perspective: Networks in Comparative Perspective: UK, Italy and Spain.” (Northeast Political UK, Italy and Spain.” (Northeast Political Scxience Association)Scxience Association)

• (March) “The European Disability (March) “The European Disability Movement and Transnational Forces: Movement and Transnational Forces: The Challenges of Technology, The Challenges of Technology, Globalization, Europeanization and Globalization, Europeanization and Marketization for a Maturing Marketization for a Maturing Movement.” (International Studies Movement.” (International Studies Association).Association).

L:ist of Conference papers, L:ist of Conference papers, Cont’dCont’d

• 2004 (Nov) “Disability Organizations 2004 (Nov) “Disability Organizations in Southern Europe (ISA-West)in Southern Europe (ISA-West)

• (March) “The Evolution of the (March) “The Evolution of the European Disability Movement” European Disability Movement” (International Studies Association)(International Studies Association)

• (March) “Disability Organizations in (March) “Disability Organizations in Denmark” (Conference of Denmark” (Conference of Europeanists).Europeanists).

Disability Organizations in Europe Russell Olson David Penna Mairin Veith.

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