1.Please describe how and why ENIL happened.
At a conference in Cologne in 1987 a group of us consisting of Judy Heumann, Horst Frehe, Lothar Sandfort and myself arrived at the conclusion that we needed a European meeting on personal assistance. Lothar who at the time was working for the Green Party office in Bonn arranged money from the European Greens and did all the logistical preparations. I helped in writing the agenda and supplied the addresses of all the people I thought should be invited – some 60 people in Europe who I personally knew as needing and being interested in personal assistance. Because of this role I was the conference keynote speaker (s. www.independentliving.org/docs2/enilpakeytoil.html ) In my address I suggested that the conference should not remain an isolated event but should be the beginning of a series of efforts over a long time. On the third conference day this suggestion was taken up and we formed an organization. For its name I suggested “European Network on Independent Living” emphasizing the importance of a fast-moving, non-bureaucratic flat organization as opposed to the traditional slow-moving hierarchical representative international pyramids such as DPI. I was elected as ENIL’s first chairperson (the title “President” used today was considered fitting for a pyramid but not for a network) and charged among other things with coordinating the work with the ENIL bylaws (www.independentliving.org/docs2/enilstatute.html ), action plan (www.independentliving.org/docs2/enilactionplan.html ) and IL principles (www.independentliving.org/docs2/enildocs.html#anchor862229 ).
2. What were the main priorities for you, personally, when forming ENIL?
I saw the need of expediting and speeding up the rate of transfer of good ideas and projects within countries and across Europe, the need of a network that would connect individuals and initiatives at the grass roots level and help them to organize themselves in self-help groups. The organization was to be lean and mean, flat and not a pyramid, fast, flexible and non-bureaucratic. The Board was to be elected, at the latest, after three years to make sure that new people would feel welcome.
3. What problems did ENIL need to overcome in the beginning?
Lack of interest among disabled people, lack of competent administrators, lack of good people competing for Board positions
4. How important was it to you that ENIL was user led, and run and controlled by disabled people, what do you see as the advantages of a user led organisation?
To have ENL run and controlled by disabled people was so crucial to me that I wanted it in the ENIL bylaws. The reasons: we are the best experts on our needs, we have to be the driving force in changing society, we need to demonstrate to ourselves, other disabled people and the public that we can be capable responsible citizens.
5. What do you think were the key issues for disabled people 20 years ago at the national level and in the European context?
The key issues 20 years ago and still today are:
– lack of cross-disability thinking as a result of brainwashing into the medical model
– lack of personal assistance
– charity organizations begging money from the public and governments for incarcerating disabled people in residential institutions
– lack of barrier-free infrastructure incl housing
– segregation of disabled school children
– disabled people are still not sufficiently represented by disabled individuals in politics, administration, business, science, culture, media
– lack of self-confidence, personal and collective pride
6. In 2009 do you think there are more or less user-led organisations at national and European level?
More, but not enough – just look at EDF as a telling example of the reality in Europe
7. What do you feel have been the key changes for disabled people over the past 20 years including achievements and set-backs?
Some improvements in accessibility, a few countries have improved their legislation and started with cash payments for personal assistance services, more visibility in Brussels and in some national governments,. Yes, we are moving forward but only very slowly and we are still far away from the freedom of choice and the quality of life that our non-disabled brothers and sisters, friends and neighbours take for granted.
8. How can disabled people and ENIL continue to make an impact on national and European decision makers?
I am not sure that the development would have been so much different if ENIL had not existed. A lot of other organizations are working on impacting the European level. In some European countries the IL movement has achieved clear improvements at the national level. Most likely they would have done this also without ENIL around. The task I see for the IL movement is twofold: one, to empower ourselves as individuals, family members, citizens and, two, to empower ourselves collectively by organizing ourselves in self-help groups getting a stronger voice in our communities and countries demanding changes and showing the way how to get there.
ENIL has neglected the grassroots level. Most of its attention has been directed at Brussels. Sure, rubbing elbows with MEPs makes you feel important but most of the action is elsewhere.
9. What do you feel are the new issues ENIL faces in promoting Independent Living in Europe today?
“Independent Living” has become a household word liberally used by almost everybody often without the necessary understanding of its meaning and implications. I’m afraid we lost control over the term.
We need an organization that is meaningful to individuals and initiatives at the grassroots level, an organization which gathers and disseminates our collective resources in terms of personal experience and insights, knowledge, arguments, research, manuals and guides, examples of good policies, experts among ourselves. In this way, we could better learn from each other and spread our message to disabled people everywhere.
10. What or who would you say was your biggest inspiration?
The peer support group sessions I participated in in the early 1970’s in Berkeley, California: two disabled facilitators and about seven disabled people who quickly identified with each other, provided role models for each other, learned from one another, empowered themselves through that experience. Are there still peer support groups around anywhere? If you know of any, please contact adolf.ratzka at independentliving.org
11. What’s your most disliked political cliché
“Politicians must take their responsibility!” WE have to take OUR responsibility and take the initiative, do our homework, show the way forward, and mobilize our allies. That will get politicians moving.
12. If you could make one European law what would it be?
A Europeans with Disabilities Act patterned after the Americans with Disabilities Act but with an addition that would legally entitle European citizens with disabilities to cash payments for personal assistance. These payments should be based solely on need and not on the recipient’s or his/her family’s income.