As we near the end of the year, we wish to take an opportunity to reflect on what we have done, and highlight other memorable moments. Instead of the usual Newsletter, we will take you through the year 2021 at the European Network on Independent Living. We begin with some facts and move on to impressions shared by some of our Board members, staff and volunteers.
– We began the year with a new team, having said goodbye to Marco Carnesecchi and Frank Sioen, who moved on to other opportunities. During the year, we were joined by Stanislas Roisin, Michael Goossens and our European Solidarity Corps volunteer Peadar O’Dea. We thank ULOBA, STIL and GIL for their ongoing, generous support, which made it possible to continue with our important work of fighting for Independent Living.
– Many of our members took part in the regional consultations on the upcoming guidelines on deinstitutionalisation, which will be adopted by the Committee on the Rights of Persons with Disabilities next year.
– Our Call for Action: Protect the Right to Family Life & Prevent Institutionalisation of All Children – launched jointly with other organisations – was supported by over 200 organisations and individuals from all over the world. Our Board member, Rados Keravica, was one of the few disability activists who spoke during the Day of General Discussion on Children in Alternative Care, organised by the Committee on the Rights of the Child.
– This year’s Independent Living Day, on the 5th May, was dedicated to Siarhei Drazdouski and Aleh Hrableuski, from the Office for the Rights of Persons with Disabilities in Belarus. Siarhei and Aleh spent most of the year in detention, because of their work defending human rights. They were only released recently, but still face charges.
– With the Covid-19 pandemic still making life very difficult, especially for people in institutions and those having to shield in their homes for most of the year, we were forced to postpone Freedom Drive and our General Assembly until next year. Instead, we organised a 3-day Freedom Surf, with many online events, which were very well attended.
– The fact that most activities took place online allowed us to take part in the Conference of States Parties to the CRPD and FRA’s Fundamental Rights Forum, where we co-organised side events and sessions with partner organisations, on independent living.
– We welcomed many new strategies this year, most notably the new European Disability Rights Strategy 2021 – 2030. We saw Independent Living become one of the key pillars of the Strategy, and became part of the new Disability Platform.
– We expanded our work at the international level, thanks to opportunities to connect remotely. We worked alongside other members of the World Independent Living Network, the Korean Disability Forum, colleagues in India and Chile, and started looking into the use of EU funds globally, with the European Disability Forum.
– With countries receiving large budgets to deal with the impact of Covid-19 pandemic, we raised concerns about plans for new investments in institutions. With Independent Living Austria, we submitted a new complaint about EU funds going into institutions and sheltered workshops, and have been following up on complaints against Romania, Poland, Portugal, and other countries. Close to the end of the year, we launched a petition to end institutionalisation, which remains open for signatures.
– We started two new projects – on personal assistance in Turkey, and on enterpreneurship, and continued working on accessible transport and family planning.
– This year was once again marked by great collaboration with other European and international disability rights organisations, through our work on the guidelines on deinstitutionalisation and the right of the child to live in the family. We have been working closely with the Validity Foundation, Disability Rights International, Inclusion International, International Disability Alliance, TCI Global, Disability Rights Fund, the International Federation on Spina Bifida and Hydrocephalus, the University of Pretoria and the University of Leeds.
– We continued the work of the European Coalition for Community Living, by linking up with those involved in deinstitutionalisation reforms and projects all over Europe, and supporting one another.
– Finally, and sadly, we lost several Independent Living fighters and friends – most notably Kapka Panayotova and Slawek Besowski, both of whom left us suddenly and unexpectedly. May they rest in power.
To all our members, friends, allies and partners – we wish you Happy Holidays and see you at the Freedom Drive next year!
Team of the European Network on Independent Living – ENIL
And some words from ENIL’s team
Jamie Bolling – Co-Chair of the Board
A New Year’s Greeting from me, Jamie Bolling – Co-chair of ENIL with hope that 2022 will be a better year! This year is nearing its finish and has been another marked by Corona. Many have lost loved ones, and others have become disabled due to the virus. We who have fared well, are still faced with beginning yet another year with anguish wondering what Corona has in store.
ENIL and our CILs around Europe have continued working at a fast pace, promoting the human rights of disabled people. It often feels though as if we are going backwards at an even faster pace that is frightening. Having been active promoting human rights for disabled people for a long time, I do know that history shows how progress goes forward with some steps and then does suffer backlashes. But this backlash seems stronger than ever.
In spite the fact that all our European countries have ratified the CRPD, it can be seen how the implementation varies. Concepts are interpreted in different ways and the General Comment nr 5 is not being respected. Sometimes the fight for our rights seems meaningless and yet we cannot give up. We do know that values have changed and that the CRPD is a paradigm shift which will take time to take root. And a convention that has given us hope!
This past year has been heavy as many loved ones have gone on. It is always so hard to understand that someone is just not there anymore. And yet so it is. ENIL misses Kapka Panayotova who was a strong force for our movement. Kapka was also a close friend to many of us. And now I can no longer dial her on Skype and ask – How are you?
I know there were many others who also have gone on within our movement. Together we will have to comfort one another in our loss.
This fact also emphasizes that which we know, it is so important that the movement is strengthen by the youth who needs to take over the empty places on our chess board for the march forward.
So with hope for a better year, I send my best wishes for 2022, for ENIL and the work we do together and for all of our CILs and our national movements for the rights of disabled people.
Nadia Hadad – Co-Chair of the Board
The year 2021, started as a hopefull one. We believed our scientists would find fastly a medication that could heal us. Instead of that, sadly enough we were forced to lobby for Covid recovery plans to consider us. Most service providers pretended that with extra budgets they could protect and support us, while they collectively continued to ellaborate services and houses that are segregating and killing us, using independent living and inclusion as in a mythology. We clearly stood up saying STOP missusing our terminology!
After a lot of consultations and even meditations, the European Disability Right Strategy 2021-2030 came with a lot of expectations. It aims to ensure that people with disabilities can live free from discrimination. Independent living is a big target, that we welcome in line with the CRPD implementation, so people can experience full social and economic inclusion on an equal basis with others, But for that we need freedom of movement and human rights beyond borders! Independent living is not possible in collective care, personal assistance is not something we want to share. The 12 pillars of independent living must lead to a life in the community as real inclusion, so enjoying a decent and qualitative life is not an illusion!
For all those still living in institutions, we hope the CRPD Committee’s DI Guidelines will come early in 2022 with real solutions. That every disabled person, is a representative part of the community. Whatever the support degree may be, the needed personal assistance will allow the person to live free. Even the media will change from portraying us as vulnerable or heroes, to people in life positively. The Society will open her arms and we will all live respectfully in harmony. By joinging forces this can become a reality!
Rados Keravica – Board member
The year behind us was yet another one marked by the pandemic. Much of the disability activism and advocacy moved to an online sphere. While the opportunities for in-person meetings were restricted, new opportunities for online participation have arisen. That made it possible for many of us to undertake new advocacy activities and foster partnerships and communities with our allies from all around the world advocating for independent living in the community. This year the United Nations organised the Day of General Discussion on Children’s Rights in Alternative Care. I was representing ENIL in the coalition of disability advocacy organisations advocating for the right of all children to grow up in a family environment. I took part in drafting the submission and I was speaking at the DGD emphasizing ENIL’s stance that no institution, small or large is a place for children. I also supported our partners in Serbia, Mental Disability Rights Initiative – Serbia to organise a webinar on personal assistance for adults with intellectual impairments as part of the joint advocacy efforts to expand the criteria for PA service so to include this group of users. The end of the year was marked by the sad news of Kapka’s passing. She was a fierce advocate and a leader of the independent living community and she will be greatly missed!
Kamil Goungor – Development Officer and Projects Coordinator
Despite the second year of pandemic, 2021 was a quite active and memorable year for ENIL. On the good side, I remember the successful Independent Living Day campaign on 5th May, as well as the Freedom Surf in September, with lots of interesting sessions you can still follow on our YouTube channel. Personally, I am also very excited about the new collaboration with the Leeds University, about the funding for our new website and about the new colleagues that joined us! And of course I can’t be more proud of the strong advocacy and policy work we did once again, together with many of you! On the bad side, the shocking news of the loss of Kapka Panayotova and Sławek Besowski, two independent living leaders and personal friends, and of course of the numerous cases reported to us about abuse in institutions across Europe. We need you on our side in 2022, to be together loud and proud for our rights, and we are looking forward to see you at the Freedom Drive 2022!
Michael Goossens – Human Rights Officer
Although I just joined the team recently, I’m already proud that I had the opportunity to work on concrete projects like assessing EU fundings outside the EU but also working on a proposal to the CRPD Committee regarding comments on Article 27 (CRPD). I learn as the days go by and I can’t wait for other opportunities and people to meet. I know the impact ENIL has and the possible effects of our action. May the fight continue in 2022!
Stanislas Roisin – Office Manager
It has been a pleasure to work with ENIL this year. I think we managed to do quite a lot this year and I was very impressed by our own capacity in terms of individual actions being such a small team. I think for me the most challenging issue has been the time management. I spent a lot of time researching and reorganizing the financial information. It was difficult to dig into each projects while trying to figure out the overall financial situation. Then I had some unexpected software problems: the online Office 365 of ENIL Office is not always compatible with the Open Office I use in my computer. I remember having to change on an Excel sheet each individual points to commas so that it recognized the numbers 😉
Áine Kelly-Costello – Volunteer
Through ENIL in 2021, I’ve had the opportunity to work with the CRPD secretariat, analysing feedback from consultations on deinstitutionalisation. Prior to this, I shamefully had not even begun to internalise the extent of the ongoing harm globally that continues to play out in 2021 from institutionalisation. Funders, such as governments, and also including the EU via its structural funds, do grave and lasting damage when money is channelled into so-called improvements to institutionalised living, which actually do nothing about putting the resourcing in place to facilitate transitions to living in the community. The CRPD Committee have now published an annotated outline of DI guidelines, , and will shortly issue a draft which you can provide feedback on.
Laura Alčiauskaitė – TRIPS Project Coordinator
Year 2021 has been very colourful for me. Working at ENIL brought to me a lot of fresh insights, innovative ideas, provoking thoughts and – most import- meeting a lot of strong and inspiring people. Even though some of them have already left us this year, I will never forget their inner strength and courage to fight for the independent living. And despite of having a lot of barriers in our societies, I still believe the positive changes are on the way. For the upcoming year 2022, I wish that we all will be able to contribute to these positive changes simply by being the examples that disability is no limit to have independent, joyful and successful life. Happy holidays everyone!
Ines Bulic Cojocariu – Deputy Director
For me, this was a busy year, what with all the work and moving with my family from London to Strasbourg. I would have said it was a generally good year for ENIL, had it not been for the shock of losing Kapka towards the end of the year. This has been, and still is, hard and I miss Kapka’s voice and her little messages, checking on me and all of us at ENIL. Still, it has been good to work together with our Co-Chairs Jamie and Nadia, our team, our Board, our members and so many colleagues and friends in Europe and around the world. We don’t always feel like we make a difference, but I do know that our work is important. So, Merry Christmas to those who celebrate, happy holidays and I look forward to whatever 2022 brings us! Hopefully, just the good things.
