Disability Organizations in Europe

1. Disability Organizations in Europe Russell Olson David Penna Mairin Veith

2. Research Questions • How has the European disability movement become institutionalized? Are there regional differences? • Has this process impacted the tactics these organizations use to influence government? • Has this process impacted the relationship between group leaders and group members?

3. Research Questions, continued • How has this process been influenced by events: • Within the movement? • Within the national political environment? • Within the European political environment? • That can be labeled “global stimuli”?

4. Background to the Movement: Important Dates/Events • Pre-1900-Early 1900s: Most Disability Organizations are Deaf or Blind Organizations; some are established as charities, but most are “of” organizations. • Post-WWI-Post-WWII: establishment of national organizations for physically handicapped war veterans (WWI, WWII, Spanish Civil War).

5. Historical Background, Continued • 1950s, 1960s: Establishment of increasing number of professional societies based around diseases and conditions; these organizations frequently claim to speak for the disabled. Expansion of social security supports in many countries • 1970s-1980s: Disability Protests often influenced by ILM in US/Canada

6. Historical Background • 1980s, 1990s: Widespread establishment of organizations controlled by people with disabilities (this happened much earlier in certain countries.) • 1990s/2000s: Disability organizations routinely consulted by governments concerning legislation impacting members.

7. Background: Disability Movement Ideology • Disability is related to an individual's identity: it does not need to be "fixed" any more than a person's race or gender needs to be "fixed". • There is a collective consciousness among members. • There are group boundaries.

8. Disability Ideology, cont’d • Society has the responsibility to remove handicaps • A handicap is an obstacle (in the nature of an interface) that prevents a person with a disability from participating in society. • Handicaps are socially constructed. They are culturally biased assumptions about how individuals should relate to society.

9. Disability Ideology, cont’d • The accommodations that society must afford individuals with a disability are in the nature of rights. • A right to an education, means an education appropriate to the individual; a right to vote means that a person must have access to the polling place.

10. Disability Ideology, Cont’d • Disabled people are able to organize and represent themselves. • Disability organizations should be controlled by disabled individuals themselves. • Disabled people are experts on their own situation and can best judge the appropriate ways to remove obstacles that prevent their participation in society.

11. Methodology • Over 4 years we conducted interviews (more than 66) with disability organizations. • We collected written surveys from 103 organizations. • We also collected additional data from 31 organizations from web pages and published literature for analysis on some variables. • Total N= 160 organizations.

12. Methodology, continued • Countries within the EU where we conducted interviews: UK, Ireland, France, Germany, Netherlands, Belgium, Spain, Italy, Austria, Sweden and Denmark. • Travel and expenses were supported by a GRI Priority Grant and the Department of Government and History. • (Thanks!)

13. Findings: Structures • Today there are several common organizational structures among disability organizations. • Local and or regional organizations of a particular disability constitute a national association. • National associations typically have boards that provide representation to local organizations. • Alternately board members may be elected by the general membership.

14. Findings: Structures • Each country typically has a multi-disability national federation that represents all disability groups • Almost all large disability organizations belong to this umbrella group. • Board members typically represent the larger organizations • These organizations tend to work on a limited number of issues and operate by consensus.

15. Findings: Structures • Most national organizations also were members of European level organizations for that disability, i.e. European Union of the Deaf. • National Umbrella Organizations were members of the European Disability Forum. • Significance: • Improvement of Information sharing • Some action at EU level

16. Findings: Professionalization • More than 90% of the organizations in our study had paid staff, their own office space, bank accounts, and their own office equipment. • A few new organizations were dependent on grants for almost all of their funding and had uncertain futures. • Several organizations were wealthy enough to hire professional lobbyists or managers full time.

17. Democratization • Democratization was a major issue in the disability movement in the formative period. • Democratization was taken to mean the control of the organizations for disabled people by disabled people themselves. • The European Disability Forum requires that member organizations have majority control by people with disabilities.

18. Democratization • We also take democracy to mean that organizations are responsive to members. • The vast majority of organizations we interviewed conducted periodic elections for board membership. • Regular contact with members was maintained through correspondence, e-mail and newsletters as well as periodic membership meetings and conventions.

19. Tactics for Influencing Governments • Throughout Europe, most organizations pursued insider tactics such as lobbying, commenting on legislation. • Few organizations regularly pursued outsider tactics such as use of the courts or protests.

20. Results: Outsider Tactics • Almost 60% of organizations almost never participated in protests.

21. Results: Outsider tactics • Almost 85% of organizations said they almost never went to court.

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

23. Results: Insider Tactics • While 20% of organizations never spoke with legislators, almost 60% of organizations spoke with legislators at least quarterly.

24. Results: Insider Tactics • More than 60% of organizations commented on legislation at least quarterly.

25. Analysis of tactics • Many organizations admitted they had come to rely on insider tactics because they had become more effective due to improved contacts with the government. • For many, outsider tactics entailed risks to government contracts for service provision and state funding for the organizations themselves.

26. Analysis of Tactics • Organizations were surprisingly politically sophisticated for comparatively new organizations. • Most recognized the value of maintaining tactics with various political parties, even ones that might never form the government.

27. Caveats • Some organizations admitted that they unofficially supported protests organized by other groups (or “spontaneous” protests) since staff members attended protests in their “private capacity. • Many organizations indicated that there may come a point where protests again become more significant.

28. Caveats, cont’d • It also seemed to us that in some situations interviewees downplayed their role in protests to “seem more professional.”

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

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

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

32. Other Findings, continued • Countries with strong federalist structures/regional traditions (Germany, Belgium) had weaker national organizations and stronger regional organizations. • France seemed to have a large number of small national (and ephemeral) groups (and a few large ones). Traditionally French interest groups are organized around ideological parties.

33. Other Findings, continued • There were no major differences in level of professionalization regionally. • While many groups admired the US’s ADA, they saw it as inappropriate to their political/legal system.

34. Other Findings, Continued • Technology has presented significant opportunities for the disability community (internet communication, accessibility devices, etc.) but also significant challenges (cochlear implants, pre-natal testing, inaccessible technology, etc.). • Public attitudes toward disability have improved significantly but are far from ideal.

35. Availability of findings • Most of these findings are developed in several conference papers listed on the next slide. Contact David.Penna@gallaudet.edu for an electronic version.

36. List of Conference Papers • 2005: (Nov.) “European Disability Policy Networks in Comparative Perspective: UK, Italy and Spain.” (Northeast Political Scxience Association) • (March) “The European Disability Movement and Transnational Forces: The Challenges of Technology, Globalization, Europeanization and Marketization for a Maturing Movement.” (International Studies Association).

37. L:ist of Conference papers, Cont’d • 2004 (Nov) “Disability Organizations in Southern Europe (ISA-West) • (March) “The Evolution of the European Disability Movement” (International Studies Association) • (March) “Disability Organizations in Denmark” (Conference of Europeanists).