World Report on Disability at EP

The first ever World Report on Disability, produced jointly by WHO and the World Bank, will be presented in the European Parliament,

  • Where: Josef Antall building, room 6Q1
  • When: 7th December 12:30 – 15:00

The event will be hosted by Dr Adam Kosa, MEP and EDF Acting Director, Javier Güemes will be speaking.

Other speakers include:

  • László Andor, Commissioner for Employment, Social Affairs and Inclusion for European Commission.
  • Olivier Varhelyi, Ambassador, Deputy Permanent Representative of Hungary to the EU
  • Tamar Manuelyan Atinc, Vice President for Human Development, World Bank
  • Jose Martin Monreno, Director Programme Management, World Health Organization European Office
  • Lars Bosselmann, Advocacy Manager, CBM

The report is a significant contribution to the implementation of the Convention on the Rights of Persons with Disabilities and the European disability strategy 2010 – 2020.



To register please contact the organiser CBM (EDF Member):
or by Telephone at +32 (0) 22569001 by 30 November 2011



The Swedish crisis

The Independent Living movement in Sweden has a long history of demonstrations. Now it’s time to take on the placards again and rescue assistance!

Country after country uses the economic crisis to cut the funding of reforms of personal assistance. In Sweden the savings proposals is threatening the world’s best personal assistance legislation.

Due to recent figures from the Swedish Social Insurance Agency (who is responsible for all matters of personal assistance in Sweden) about five percent of the assistance users now are losing their personal assistance after their needs have been reviewed. They are no longer considered to have at least 20 hours of basic needs per week*, often because they are able to bring the spoon or fork to their mouth (not necessarily with food on).

The Social Insurance Agency has also pioneered the use of the term “active” time. This means that if you have need of assistance a few minutes now and again but manage yourselves in between, you are only granted assistance specifically for the active time.
Even people with more complex needs have had drastic cuts in their assistance. There are members in JAG who have lost their assistance hours at night despite the needs being uniformed, for example persons with epilepsy who are unable to alert in need of assistance.
The Social Insurance Agency is also trying to make the application of assistance benefit more “unified” by, among other things, define what specific activities and situations that should be considered as part of daily life. The Swedish Independent Living movement is of course questioning on what grounds the Social Insurance Agency considers it’s their mandate to define the law. It is totally against the intentions of the assistance legislation to deny someone support by reference to a norm! (more…)

Researching participation in the family for children with disabilities

Jenny Wilder

Jenny Wilder, PhD in Psychology, Senior Lecturer in Special Needs Education Mälardalen University, and her colleagues started an inquiry in 2010 that will continue for three years, called PFA-CHILD, on how children with considerable disabilities participate in different family activities. The JAG Association inSweden is collaborating withJönköpingUniversity and two other organizations in this project.


­- I want to broaden the knowledge about this group of children. Often in inquiries this is a group that is missing. There is a huge lack of knowledge about this group in scientific means. But this group of children exists, and they have the right to have good life, says Jenny Wilder. (more…)

Institutions and personal assistance in northern Europe

By Josefin Sterner, intern at the JAG Association

 A charting of the existence of institutions and personal assistance in Estonia, Latvia, Lithuania, Denmark, Norway, Iceland and Finland shows that though the UN Convention on the Rights of Persons with Disabilities have been signed and soon ratified by all of these countries the result vastly varies between the countries.

It is extremely difficult to find information about the amount of persons living in institutions or people granted personal assistance. Neither the governments nor the organizations in the IL-movement have the statistics and no information is to be found in national databases. (more…)

Artist challenges stereotypes by using models from “Funkisbyrån”

We have previously written about the model agency for people with disabilities that JAG started three years ago. Two of the models, Stefan Nilsson and Frida Gustavsson, is currently present in a cross-border exhibition of photographs by famous Swedish artist Elisabeth Ohlson Wallin. The aim of the exhibition is to challenge norms. The title of the portrait is “… people come in all sizes and shapes.” (more…)

DPAC Charter of Rights for Disabled People

Extract from the document:

“Disabled People demand Rights not Charity and we reject all cuts to our services and benefits.


Disabled people must have the right to live independently in society with the necessary levels of support to take a full and inclusive part in everyday activities their non-disabled peers take for granted.

To ensure this can happen disabled people must have full entitlement to free care and support services of their own choice with complete transparency in scoring and resource allocation for social care funding.

Care and support services must be fully transportable between local authorities ending the current postcode lottery.

To continue to provide care and support for those with the most complex needs the Independent Living Fund must be retained and reopened to new applicants with adequate funding for this. It should not be restricted to those in employment.

There should also be an immediate end to the use of child carers whose parents should be provided with the care and support they need to live independently.

There should be no means-testing for aids and adaptations needed to enhance independent living, including for disabled children.”

Download the full document (DOC) (PDF)

Latest draft of a charter of rights for DPAC and others to work towards which came from their recent national conference. If you need more info please send an email to

See the Original post.

ENIL Conference in the University of Valencia (Spain)


university-of-valenciaLast 18th  november 2011, there was a conference under the title “Independent Living, a Life Empowerment Strategy”, it took place in the Social Education Faculty of the Valencia University.

The speakers were the ENIL collaborators Katjia Villatoro, José Alfonso López and Juan Benages.

The conference sparked off big interest and the audience was implicated, beyond the academic interest. The issues treated were from the history of the independent living movement to the UN convention on the rights of people with disability. The final conclusión was that IL means equity, but at the same time it’s a viable economical model, a profitable driving force of social productivity, employment creation and socioeconomic growing. It provides a social investment system with a high rate of investment return for the public and private sector, as well gives everybody the opportunity  to choose his own way of living.

After that conference we had the opportunity to plan a future event for a full day duration workshop, under the idea of increasing the diffusion range of the IL philosophy.



DPAC first National Conference London 29th Oct

Activists take next step in fight against cuts

Scores of disabled activists have come together to plan the next stage of the fight against the government’s cuts to disability benefits and services.

Members of Disabled People Against Cuts (DPAC) heard from activists, politicians and celebrities and discussed their campaigning priorities.

DPAC was formed after its co-founders organised the first disabled people’s protest as part of the mainstream march against the cuts at last year’s Conservative Party conference in Birmingham.


MDAC launches Croatia report

Last October MDAC, in partnership with The Association for Social Affirmation of People with Mental Disabilities (SHINE), launched the publication “Out of Sight: Human Rights in Psychiatric Hospitals and Social Care Institutions in Croatia”.

The report (available in Croatian and English) presents the findings of monitoring visits made to four psychiatric hospitals and four social care institutions in June 2010. It makes assessments according to international human rights law and standards, identifies problems in the implementation of these standards and presents specific legislative shortcomings that create limitations or provide an insufficient framework for practice. However, the underlying motivation behind the publication is to highlight the daily lives and experiences of people with intellectual disabilities and people with psycho-social (mental health) disabilities living in these institutions, whether temporarily or as life-long residents. In doing so, the report emphasises the need to focus laws and policies to fulfil the right to live in the community for every person with disabilities.

The launch was attended by staff members of some of the institutions monitored, the Croatian Disability Ombudsperson’s office, representatives of MDAC, SHINE and the monitoring team, Professor Marija Definis-Gojanovic from the European Committee for the Prevention of Torture and the UN Sub-Committee for the Prevention of Torture (who wrote the foreword to the report) and the Attaché of the European Union to Croatia.

Coverage of the event by the Croatian television station RTL can be watched here with English subtitles.

Mental Disability Advocacy Center

Hercegprímás u. 11, H-1051 Budapest, Hungary
phone: +36 1 413 2730 | fax: +36 1 413 2739 | email: 

Sterilization of Women and Girls with Disabilities: A Briefing Paper (November 2011)

In many parts of the world, women rely on access to a range of methods to control their fertility, including voluntary sterilisation. However, too often, sterilisation is not a choice. Women with disabilities are particularly vulnerable to forced sterilisations performed under the auspices of legitimate medical care. The practice of forced sterilisation is part of a broader pattern of denial of the human rights of women and girls with disabilities. This denial also includes systematic exclusion from comprehensive reproductive and sexual health care, limited voluntary contraceptive choices, a focus on menstrual suppression, poorly managed pregnancy and birth, involuntary abortion, and the denial of rights to parenting. These practices are framed within traditional social attitudes that characterize disability as a personal tragedy or a matter for medical management and rehabilitation. The difficulty some women with disabilities may have in understanding or communicating what was done to them increases their vulnerability to forced sterilisation. A further aggravating factor is the widespread practice of legal guardians or others making life-altering decisions for persons with disabilities, including consenting to sterilisation on their behalf.

This briefing paper has been jointly prepared by Women With Disabilities Australia (WWDA), Human Rights Watch (HRW), the Open Society Foundations, and the International Disability Alliance (IDA) as part of the Global Campaign to Stop Torture in Health Care. The paper gives a background to the issue of forced sterilisation, outlines various international human rights standards that prohibit forced sterilisation, and offers several recommendations for improving laws, policies, and professional guidelines governing sterilisation practices.

PDF format

Word format

Role model: Meet Jose Alfonso Lopez from Spain

Role model: Meet Jose Alfonso Lopez from Spain

That’s my evolution in “The two Europes”: a mix of contrasts with a bittersweet taste.

I’m José Alfonso. I’ve been on a wheelchair all my life and this is what I want to explain. My experience on wheels is a continuous challenge. I hate the monotony and I am so emotive, restless, that I can be defined as an earthquake in movement all the time. I work in many different projects.  My main work is based in Castellón at the “Diputación” (Part of the regional Valencian government) as a consultant about functional diversity. I am also president of an NGO called ADFU (University Functional Diversity Association). I’m also an ex-bussinesman because I owned a travel agency addressed to disabled people. This agency brought me some headaches and a little financial problem, on the other hand it let me to be known by a lot of people, and thanks to this i am working in the “Diputación” nowadays.

Some of my friends define me as a political-animal, but I would prefer to be known as a rebel with a clear objectives and one leitmotiv: effective equality it means Independent Living. How did I arrive to this conclusion? That’s what I am going to explain below.


Valencia conference on Independent Living and Human Rights

Jamie Bolling – Executive Director of ENIL visited the Secretariat in October. The main event was a conference on Independent Living and Human Rights organized by Carmen Najera– the Spanish Coordinator. Jamie spoke on the Freedom Drive and follow-up  through meetings with MEPs.

In the background during the day a TV team was conducting interviews of various people for a film on Independent Living inSpain. So stay tuned for the film!

Meetings were organized between IL members and other actors including architects and politicians to discuss IL indicators. Questions on planning of inclusive housing projects were discussed as well as the importance of awareness raising of politicians and the influence of political party programs. (more…)

ICAVI and ENIL Swedish Mission – In the frame of the San Sebastian Cluster of Assistive Solutions

The Swedish mission was carried out on November 7 – 8, 2011 in both Stockholm and Sundsvall. Jamie Bolling, ENIL Executive Director planned the mission for the San Sebastian Cluster of Assistive Solutions. It was one of the first activities led by the Cluster launched in January 2011 by the county council of San Sebastian through the Department of Economical Development. The Cluster consists of specialized agents of the sector including Grupo ICAVI as technical adviser, with Laida San Sebastian in the lead. Other partners are for example companies for assistive technology (AT), personal assistance and supported employment, as well as research centers.

The purpose of the mission was to contribute to the possible economical and employment growth of the region of San Sebastian by promoting the AT sector particularly through innovation, internationalization and through the introduction of new products and services. Interest in supported employment and Independent Living was also expressed. For this purpose, a visit to Sweden was decided upon, being one of the most developed countries in the field of AT and in disability services.


New book: ‘Theses For The Theory And Culture Of Handicap’

On the occasion of the twentieth anniversary of the adoption of the Prague conclusions, adopted at the International seminar about Independent Living, YHD would like to present to you the new book on with the title ‘Theses for the theory’ and culture of handicap written by Ph. D. Dušan Rutar.

The turning point in our lives that charted our course and that we made sure to stay on was meeting Dušan Rutar Ph. D., who came to work as a psychologist at the Institution for Enabling Handicapped Children and Youths, where we had lived since our childhood and where we went to secondary school. (more…)

Enil Mission To Bulgaria – Report

Training in Burgas – photographer Sara Hamrin

ENIL with the representation of the Executive Director Jamie Bolling was on a mission in Bulgaria, from 1st to 8th October 2011. The main purpose of the mission was to contribute to a project for active citizenship of young leaders in the IL movement in Bulgaria and to influence various actors regarding the elections to take place on October 23rd on the importance of Independent Living. Meetings were arranged with Candidates, the public through the round table, members of IL, DPOs, the Office of the Ombudsman, with people living in the Institution in Stara Zagora, newspapers, TV, radio and the staff of the CIL Sofia.


AER Press release: Lets’ change our perception of disabilities!

Assembly of European Regions webLa Rochelle, Poitou-Charentes (F), 20th October 2011

The working group “Equal Europe for People with Disabilities” of the Assembly of European Regions (AER) met in La Rochelle (F) to the kind invitation of Segolène Royal, President of Poitou-Charentes, and Michèle Sabban, President of AER, to exchange views on successful strategies for implementing the UN Convention on the Rights of People with Disabilities. The choice of Poitou-Charentes is no accident: disability is a political priority since 2004 and it is the first French region to have adopted an Agenda 22 on 15 December 2008.

Agenda 22 is a methodology for applying the UN Convention on the Rights of People with Disabilities. It helps raise awareness around disability issues at all levels of governance and creates a framework for improving accessibility for all and across the board to all services, facilities and activities.

“This policy of the Poitou-Charentes region is fully in line with AER’s objectives to raise awareness among the regions about the UN Convention and support them to implement its provisions,” stated Metin GENÇ, Chairperson of the AER working group “Equal Europe for People with Disabilities”. “Today the three regions of Poitou-Charentes (F), Hessen (D) and Värmland (S) each showcased their action plans for implementing the UN Convention and have proven once again that one size does not fit all and diversity matters,” he added.