Every year Uloba hold a Pride Parade in Oslo, the capital city of Norway. Hundreds of people participate in this parade every year and many people travel to Oslo to take part in this parade. The parade is the largest parade for people with disabilities in Norway and this year the ENIL Board will also participate in the parade.

One of the aims of the parade is to make people with disabilities visable and to also show that people with disabilities are strong active citizens. Each year, a Pride Prize is awarded to the person or group that has made a significant contribution to removing obstacles in society that hinder people with disabilities.  The theme of this year’s parade which will take place on the 15^th June 2013 is equal rights for people with disabilities.

In this interview between our Executive Director, Jamie Bolling and Bente Skansgard, Uloba (and former President of ENIL) they discuss the origin of this parade and the current progress being made in relation to personal assistance in Norway.

How many Pride Parades has ULOBA held?

The parade is an annual event, and this year’s parade is the sixth in line. The whole organization is busy with preparations, we are always looking forward to this event, to show Norway that we are proud people that can get things moving.

When was the first parade?

In June 2008, we started after many years of inspiration from the Independent Living Movement both in Europe, America and other parts of the world.

What was the idea behind starting the parade?

The idea was to be visible in the streets of Oslo as proud and strong people – showing the social model of being disabled. We are fighting being seen as sick people in the medical model. We are active people who are in control of our own lives; go to work, invite friends home for a meal, babysit for good neighbors, water the flowers for family members when they are away and so on. Just like everybody else, relate to other people – mean something for other people.

Who had the idea?

People from Uloba got the inspiration in the USA taking part in the Pride Parade in Chicago. A lot of Independent Living inspiration has come from the States, strong ideas that work worldwide like empowerment, de-institutionalization, de-medicalization and de-professionalization. We have strong role models like Judy Heumann who still hold a strong position in the movement. She worked for President Clinton when he was in office, and is now working for President Obama.

When and where will the 2013 Norwegian Pride Parade be held?

This year June 15^th, always June and combined with our annual meeting so Uloba people can from all over the country can come to Oslo and take part. Uloba has in the last number of years also hosted an ENIL board meeting connected to the Pride Parade. A cross-disability happening in an international setting is always a great occasion to gather political energy. And political energy is something we always need since we are constantly fighting for equal rights between disabled and non-disabled people – since this is not yet an obvious right.

What is the theme of this year’s Pride Parade?

Equal rights for disabled people are the main theme; the right to education, jobs and personal assistance. This year the Norwegian Government propose to make personal assistance an individual right, but sadly enough they want to do it in a medical, rather than a social context. The welfare state want to see us as passive and sick, not healthy and active people who will achieve something.

Who organizes the parade each year?

The parade is a collaboration between Uloba, NHF (Norwegian Association for disabled) and NFU (Norwegian Association for Learning disabled). Uloba is responsible for financing and executing the event. We keep trying to build a big coalition, but that is a long process.

Do you know or when will you know how many people plan to attend?

Last year we were approx. 400, this year we expect at least 500 people attending. Our biggest parade was in 2011, when we celebrating 20 years of hard work for Independent Living.  We managed to gather 1,300 people at the parade then.

What kind of entertainment is being planned?

In addition to the speeches and other political activity, we’re ending the parade with a free concert. This year’s artist is a well known, Norwegian rap artist. People in Oslo can see that we are many and join us for the concert – and maybe understand the importance of disability rights.

How many sponsors do you have?

We have some sponsors, but theses companies are less interested in supporting Independent Living activities than securing good relations with Uloba as a customer, as they all are among our suppliers.

Have you chosen who will be getting the Pride Prize? When will this be made public? Will you have a short film we can publicize on ENIL Website?

No, this will be made public during the event itself. We will film the entire event, and will be happy to make an excerpt available for you.

Everybody is welcome to attend this parade and if you would like further infomation please visit the Uloba website  www.uloba.no

Could you tell me a little about your background  

I was born in Novi Sad, the capital city of the Autonomous Province of Vojvodina, Serbia. Until the age of 15, I lived in Zabalj, a small municipality centre whose income mostly came from the agriculture, food and engineering industries. I spent almost half of this period in rehabilitation centres in Belgrade, Kanjiza (near the border of Hungary) and in Vela Luka at the Corcula Island, Croatia. In all these places I met a lot of different people from the ex-Yugoslav multicultural state, which had the greatest impact on my upbringing, my approach to life and later on my choice of vocation. I finished the Gymnasium of Karlovci and graduated from the Department of Serbian Language and Literature, Faculty of Philosophy, University of Novi Sad.  I specialized in Serbian language and normativistics with dictionary of disability at the same Department.

I am now finishing the M.A. studies, the lexicology and lexicography course, analysing disability representation in media discourse. In 1999, I represented the University at the conference on Disability and Arts organized by Spastic Society Athens (now Cerebral Palsy Greece) with the paper “The Space as the Main Element in the Literary Work of Disabled People”. This paper focused on the literary work of Christy Brown, Helen Keller and four authors in Serbia, including me. When I mentioned this idea for the paper to my mentor who wrote the review of my third book of poetry, she said: “Yes, I see from your poems, you live in the world between two ears”. It was the first time I faced disability at say a metaphorical level. A year later at the Discourse Analysis course, mapping the gender inequalities in public speech, Prof. Emeritus Svenka Savic told us that in the most of the public buildings, when going to toilet women walk longer than men because of its position in the building. My mum and I went to a bookshop, and on passing the cross road with a high curb I just told myself, “This place doesn’t count on me”. Thus I start recognising the elements of disablement not knowing how to name it. During my education I published 3 books of poetry, a few papers in literature and linguistics and Dictionary of Disability 2003, a result of 3 year analysis of media material on this issue.

How did you become involved in the Independent Living Movement?

I heard of the Personal Assistance service in 1998 when I met my colleague Gordana Rajkov, President of CIL Serbia who was using personal assistance at that time and who mentioned her experience in Ireland to me.

In September 2000, I represented the CPI (The Society for Cerebral Palsy Infantile) for South Backa District at the Summer camp organized by the Belgrade office of Handicap International for disabled students and young intellectuals around Serbia, aimed at encouraging us to take an active part in the disability movement. There I learnt about the models approaching disability, services, projects, writing and management. We also learnt about terminology, inclusion and the basics of Independent Living, which all influenced my future work. Also,  I met my future husband and two colleagues who a week later opened the Counselling Centre for the psychosocial support to physically disabled people LIVING UPRIGHT (one of six centres opened in Serbia by the HI) within the mutual program of psycho-social support financed by ECHO and French citizens there.

One of the first initiatives of the Centre in Novi Sad was starting a partnership within a Youth in Action project with a youth DPO in Belgium. Three colleagues came to my student dormitory asking for a partner among a youth organisation for this seminar on multiculturalism. I suggested we find a cross disability student organisation in Novi Sad that would advocate for the interests of all disabled students no matter their type of disability. We gathered a group of 17 students and young intellectuals living in Novi Sad as founders. I coordinated this work until 2002 and worked as the fundraiser until 2004. During the first 6 years of its work Novi Sad Association of Students with Disabilities started a number of educational projects on reforming the higher education system for disabled students and improving the standards for students. One of them is in recognition of a right of Personal Assistance services by the students’ standard authority at the University and Provincial level.

In September 2000, my mother, who lived with me during my basic university studies became ill. At that moment, I had to make the first existential choice in my life: to give up my further education or to find a way to live in Novi Sad and finish my studies. I asked two of my neighbours in the dormitory to assist me in having a place to live in and study. One of them, named Ivana Berar, accepted. She studied confectionary products at the Faculty of Technology and assisted me for 5 years.

At that time, the only person I knew that was living alone using a personal assistance service was Gordana. We met each other from time to time at meetings or educational events. In 2004, I started leading the Centre Living Upright and its campaign on reducing social distance towards disabled people. In April 2005, I was invited by CIL Serbia to the regional conference on disability organized within the Share See project by CIL Serbia and IC LOTOS from Tuzla in Bosnia and Herzegovina supported by HI. The topic focused on strategy for disability and creating a regional mutual voice. I had the honour to spend half an hour in conversation with Professor Adolf Ratzka from the Independent Living Institute in Stockholm about personal assistance services, the Independent Living Movement and my experience in using personal assistance services, which on a principal level as I saw, not much different from the way he explained it to me.

At this conference, we also had a chance to meet Mr. Kalle Könkkölä from Finland and Ms. Kapka Panayotova from CIL Sofia. Seeing Professor Ratzka, Mr. Könkkölä and Gordana using personal assistance and recognizing the dignity in their way of living made me to feel proud and gave me a sort of set of wings to continue. That year my first assistant got married, my husband and I decided to do the same. Before we started living together I had a new assistant who worked for me a year and a half. After finishing the campaign on social distance, Centre Living Upright started a programme on the education of political party members at the local level on disability issues. Gordana held lectures on the Independent Living Movement and support services. During this project the Liberal Democratic Party invited me to become its candidate for a member of the National parliament. I was not a member of this party, but I supported the liberal option to enter the Parliament in order to gain a balance. A few days later, Gordana was also nominated by another political party mostly focused on economic development and regionalisation. She was elected and was a Member of Parliament (MP) in a period when laws on antidiscrimination, construction, employment, education, youth and social protection that mainstreamed disability were adopted, as well as several important strategies which created the framework for further work in this field.

Meanwhile, Centre Living Upright became recognized at the local level in advocating for support services, peer education on disability, youth, health and the implementation of the Design for All Principle. From 2006 to 2008 I was suggested by CIL Serbia for Training of Trainers (TOT) on Mainstreaming Disability in Local Policies which moved me towards working on antidiscrimination. This process improved cooperation between our two centres. In 2007, at a peer education workshop, I met a girl with muscular dystrophy who was going to study Math in Novi Sad. Her studies wouldn’t be possible without assistance as she had two small siblings and her parents needed to stay at home.  We also had a colleague whose parents were at the age of 80 and the service was necessary for her. I met with Gordana and we encouraged Centre Living Upright to apply for the pilot project of organising personal assistance services to the Provincial government and City of Novi Sad in partnership among two centres and Novi Sad Association of Students with Disabilities using the standards and criteria CIL Serbia developed through its SPAS ( Serbian Personal Assistance Service ) project including the training. The Provincial Secretariat for Education approved funds for three users in 2008.

It was a start of the service in Novi Sad that still lingers. In 2009, we had 13 users, in 2010 and 2011, 13 permanent and two users according to their need, in 2012, 10 of us and now unfortunately only 8 users. In the last two years we faced attempting to solve the financial situation by including the private sector and the church. I took credit from the bank in January this year (for no civil society organisation without assets in Serbia is eligible) to maintain the service. Now we are faced with the situation that a third of funds needed for this year has been approved by the city authority but it still has not been transferred to Centre Living Upright.  The impact of the personal assistance service is, I suppose, that there is no stakeholder working in public in Novi Sad who does not know of the service, but its purpose is not recognized enough because the influence of institutional support is still great.

In 2011, CIL Serbia nominated me as ENIL board member. As a follow up of the peer education process, after adoption of the new law on education, the Centre Living Upright started the Peer Counselling centre for Disabled Children and Youth, our Parents and Caretakers which has had 280 users, mostly parents of the preschool children and young people, but  we also mainstream kindergarten and school staff.

I didn’t mentioned, the Centre Living Upright’s mission is creating the environment where all human rights of disabled people are respected and the UN CRPD is fully implemented (with focus on Articles 9, 12, 19 and 24).

Through the Peer Counselling Centre, Centre Living Upright became a part of the UNICEF global partnership on children with disabilities and development. Within its Program for  People with disabilities and equality in the public speech which I supported to coordinate, Centre Living Upright published the life stories of disabled women in Vojvodina and the book ‘Role of Arts and Media in disabling people with disabilities’. It’s a translation of the Professor Colin Barns research of media material in UK, a paper of disabled people’s view on pre-natal screening by Alison Davis and a mutual research on diabolism implemented by the SCOPE, Disability Awareness in Action and DEMOS from London. These papers changed my approach to disability terminology and now I work on finding the links between discourse analysis and Independent Living philosophy.

What do you think was the most significant moment of the Independent Living movement (eg. Project 81)

It’s starting.

What is your vision for Independent Living at present and for the future?

A colleague of mine once said that personal assistance service was and is civilisation heritage. I agree with her. Independent Living will be once accepted as people accepted electricity and the fridge, but there is a lot of work in front of us and personal investment of various kinds in order to set Independent Living principles on the mainstream agenda. Peer support needs to start aligning itself with other ways of support or even before if we would like to have active disabled citizens aware of their responsibilities, role and identities.  From 40 disabled people and the same number of the people who were or are still employed as assistants, only a few of them recognized a right to choice as an Independent Living principle.  I believe that the Independent Living Movement may influence Independent Living standards for all people in the near future.

Why do you think the Strasbourg Freedom Drive is such an important event?

The Freedom Drive is an opportunity for sharing information, for unity and to energize to continue towards Independent Living and personal assistance to be recognized as the first option for all disabled people by us, the local community and the state no matter the cost. After seeing us all together two years ago, my personal responsibility and readiness to do as much as I can for Independent Living principles and definitions to be implemented on each level of society became an obligation.

This year’s conference being the 9^th International Human Rights Forum Lucerne (IHRF) put the topic of “Human Rights and Persons with Disabilities” up for public discussion. Jamie Bolling, the ENIL Director was invited to the conference. Jamie held the keynote speech on the situation of the implementation of the UN CRPD in Europe. The hundreds of students attending the conference were challenged to change the actual situation of the world with barriers to human rights for people with disabilities. Jamie found it exciting to be talking to future doctors, lawyers, policy makers, social workers and teachers who themselves will be able to work towards better legislation and life conditions for disabled people.

Addressed during the conference were the following questions among others regarding the topic ‘Human Rights and Persons with Disabilities’:

• How does the global status quo for people with disabilities look like from a human rights perspective?
• What are the chances and challenges from a human rights perspective?
• How do we handle terms like ‘disability’, ‘special needs’, ‘disabled’, ‘inclusion’ and ‘special needs education’ and which impact do they have?
• Which aims does the UN-Convention on the Rights of Persons with Disabilities (2006) strive after?
• What is the status of implementation of the Convention in the various countries?
• How can education systems respond accurately to the needs of people/children with disabilities?
• How does the specific situation for people/children with disabilities look like regarding education, the health care system, the professional life and the cultural and societal participation?

The first international conference in 2004 addressed Human Rights and Terrorism. Other conferences have addressed the rights of the child, environmental issues and education.  Besides the students working for the cause the IHRF has been successful in organizing many partners including the Swiss government, Victorinox, the Lucerne Cantonal Bank, the Schwizerhof Hotel and many others. There is a scientific advisory board with among others Prof. Dr. Annedore Prengel
from the University of Potsdam. Jamie had met Professor Prengel at a The Mind Change conference in 2012.

The IHRF stages concerts regularly after the successful premiere of ‘Söhne Mannheims’ featuring Xavier Naidoo at the 3^rd IHRF in 2006 and the Jamaican reggae-star Jimmy Cliff in 2008. The 3^rd IHRF Concert with Thomas D from ‘Die Fantastischen Vier’ took place in May 2009. In 2010, the 1^st IHRF Concert Classic was held with the renowned pianist Maria João Pires appearing with the Human Rights Orchestra and Hélène Grimaud, the star pianist.

To keep posted with this exciting organization view the web-page at http://www.ihrf.phz.ch .

The “Latvian Movement for Independent Living” has as its goal to make an inclusive society with equal opportunities for people with disabilities; meaning that the local community is really for everyone. Society should be where every person is of high value, where every person with disability has the same opportunities as all other people.

Alexis believes that through one’s own capabilities it’s necessary to reach independent life by for example being able to make one’s own choices on what to eat or which shirt to wear each day.

“I’m the same as everyone else, with my own wishes, needs and goals. Therefore, I am trying to be more independent, trying to find a job and show society that we are also here.”

Aleksis often thinks that sometimes society does not have an understanding of people with disabilities. For example: “a few years ago I had to face an unpleasant situation when a grandmother responding to her grandson regarding my disability said it is because he was disobedient in childhood. After this kind of explanation children could start thinking that all people with disability were disobedient in childhood and as a result, he/she will try to avoid people with disabilities.”

What is your personal experience of disability?

I am disabled since birth. I have congenital hand anomalies.

How did you discover the Independent Living movement?

Through the association “Latvian Movement for Independent Living”. I am one of the founders of the association which was founded in 2009. I have been involved for four years.

Is there an area of Independent Living that you are especially interested in?

I have no special area of interest, but I would like that people with disabilities would be more independent.

Who has influenced you the most, and how?

My godmother who lives in Latvia – I have two godmothers. One lives in the USA, the other one lives in Latvia. When I studied in primary school, my Godmother encouraged me to go independently by public transport from home to school and from school to home and other places. So I started to become more independent.

Of what personal achievement are you most proud?

I am proud of many of my achievements, for example, I can fry an egg, button shirt buttons with help of a special device, photography etc.

What motivates you to be active?

Both other people with disabilities who have achieved a lot, for example athletes, and I myself, because I would like to be more independent, find a job, have my own family etc.

Do you have a favorite saying or proverb?

Disability is not a barrier for doing things that you like.

What other interests do you have?

I like to read books, take pictures and to be taken in photos with celebrities.

What advice would you give to young disabled persons?

Do not be afraid to be independent.

If you had the opportunity to change things, what would you like to change in the disability field in your country?

There should be more political interest in this field and greater support for people with disabilities. Society should change it’s attitude towards people with disabilities.

The aims of the Fundamental Rights Platform meeting are: to encourage a European debate on fundamental rights amongst civil society organizations, to facilitate knowledge and exchange of good practices amongst FRP participants, to inform the work of the FRA about challenges and promising initiatives, to create opportunities for networking and further cooperation between civil society, the FRA and other actors.

The meeting this year brought together over 200 participants, including representatives of civil society organizations and guests from numerous other fundamental rights institutions in Europe. ENIL was represented by Ms. Jamie Bolling, the Executive Director of ENIL and Ms. Vanya Pandieva, an Independent Living activist from Bulgaria. They participated actively in the panel discussions and the thematic workshops that challenged the audience with comments and thoughts on topics such as freedom of choice and the opportunities for people with disabilities to live independently.

This year the main focus on the FRP meeting was non-discrimination and hate crime. A variety of recent policy developments and good practices were shared with the focus ranging from equality, civil participation and respect to human dignity to social media as means of communicating fundamental rights.

The FRA invited for the first time civil society organizations to visit the agency’s premises in Vienna and to meet FRA experts face-to-face on the day before the FRP. We appreciated the FRA experts initiative to welcome us to the FRA Open Day, which was designed around two parts: presentation of the FRA structure and area of working and carrying out sixteen information sessions on different topics. The FRA Multi-Annual Framework for 2013 – 2017 also was presented. The leading topics were: Access to Justice, Victims of Crime, including compensation, Information Society, Respect for Private Life, Data Protection, Roma Integration, Judicial cooperation, except in Criminal Matters, Rights of the Child, Discrimination based on grounds listed in Art.21 CFREU, Immigration, integration, visa, border, asylum, Racism, Xenophobia and Related Intolerance.

ENIL’s representative Vanya Pandieva was excited to take part in some of the sessions more directly related to the human rights of people with disabilities such as: Multiple Discrimination – hosted by Ludovica Banfi, Victims of Hate Crime - hosted by Albin Dearing and Alice Hamilton, and Rights of People with Disability – hosted by Nevena Peneva and Martha Stickings. Within the sessions FRA presented their projects and shared their experience with these important issues. It was emphasized that although people with disabilities are not recognized as victims affected by regular hate crimes, they do suffer from violence and very often experience aggressive and hate provoked actions and attitudes. Another alarming issue was raised in regards to multiple discrimination. Certain people are seen as particularly vulnerable to unequal treatment, because they share a combination of characteristics that may trigger discrimination. For example, a pregnant Roma woman with disability has suffered discrimination not just because of her sex—as not all women face such treatment—not just because she has disability—as other women with disability may not face such treatment—but just because she is Roma. The exchanged experiences showed that people can suffer from discrimination regardless of their nationality, gender or other grounds, which means that we have an obligation to show zero tolerance to such behavior.

On the official day of the meeting the opening keynote addresses on the topic of anti-discrimination and social rights were made by Maija Sakslin, Chairperson of the FRA Management Board, Morten Kjaerum, FRA Director and Kinga Göncz, a Member of the European Parliament.

A lot of the debate and questions following these speeches were on the political role of FRA and its important role as a bridge between EU institutions and civil society organizations. Participants expressed a general wish for FRA to be more visible and more active. They also stated the need for FRA to expose firmly the inconsistency of the EU – on the one hand asking Member States to do more, but on the other cutting budgets appointed for social issues. How FRA can help shape the debate on human rights on a European level was another issue raised. The Convention on the Rights of Persons with Disabilities and the European Inclusion Strategy for Roma people were the policy documents mentioned a few times as powerful political tools that should be monitored and supervised in their implementation process as a guarantee for more respect for human rights.

Fostering anti-discrimination policies in the EU – tools and measures available to civil society was the other panel debate that raised many questions and concerns regarding the Horizontal Anti-Discrimination Directive, which is still a debatable issue on EU level. Raül Romeva i Rueda, Member of the European Parliament, Rapporteur on the Horizontal Anti-Discrimination Directive, Deaglán O’Briain, Chair of the Social Questions Working Party for the Article 19 Directive, Council of the European Union, and Juan Gonzalez-Mellizo, Team Leader Non-Discrimination Policies, DG Justice, European Commission were the key speakers who tried to answer to the participants’ observations and shared experience concerning the lack of political will, as well as the question of transparency of the negotiation process, especially within the Council. In the year 2000 no major political or legal arguments were raised against the swift adoption of the Employment Directive and the Racial Equality Directive. A decade later this consensus appears to have faded away. Some were referring to the current economic crisis as an argument for not adopting the directive. It was pointed out that the reality of discrimination, which extremely poor people suffer, should be indeed addressed, rather than used as an argument for not adopting the horizontal directive. A link was also made between having anti-discrimination measures and the impact that these may have on tackling hate crime.

The afternoon sessions were dedicated to ‘The floor is yours’ workshops which was the open space for  participants to share the ideas, projects or issues and discuss them with colleagues from across the European Union.

ENIL representative, Vanya Pandieva, took part in the following workshops: “Community – living – a right for all!”, “No time for questions?!  The right to ask and the right to know about human rights”, “Exploring civil society interaction with European National Human Rights Institutions” and “Training on social, economic and cultural rights”.

In the first workshop a young woman shared her personal story of being taken away from her mother as a child and being put in an institution. Her experience brought about an animated debate on the process of deinstitutionalization in EU Member States. How this process is carried out in Bulgaria was briefly described. Politicians and policy makers have demonstrated determination and strong will, which has translated into a new legal framework and allocation of substantial resources from three operational programs: European Regional Development Fund, European Social Fund, and Rural Development Program. Nevertheless, the process of deinstitutionalization has failed to move from the sustainably reproduced practices of institutionalization despite the token consensus around the need to take children and young adults (including those with physical and mental disabilities) out of the large institutions and to place them in foster care, protected dwellings, small group homes and residential family-type settings.

Participants expressed their shared understanding that we should all be aware and alert about the threat the process of deinstitutionalization could turn into re-institutionalization. A lot of work needs to be done in order for children and young adults from institutions to enjoy socialization, fulfilling life in the community and participation as equal citizens. A number of conclusions were made such as: the lack of clear direction on developing alternatives to institutional care, residential institutions reconstructed, expanded and built, restrictive interpretations of the rules for Structural Funds, barriers to the development of community services, lack of transparency, poor monitoring and evaluation and barriers faced by smaller to middle size NGOs when applying for Structural Funds.

Also debated at the workshops was the way of allocation of EU structural funds as a key factor for creating real community based services.

In the second workshop (Access to Information) participants discussed their experiences of accessing information and the faced obstacles. There was an exchange of good practices and useful tips, all of which very helpful for the future work and communication with the national and local authorities.

At the last workshop on the role of the National Human Rights Institutions (NHRIs) the interaction between civil society and such bodies was discussed. They were recognized as key players in the promotion and protection of human rights. Everybody agreed that NHRIs hold a unique position between the state and civil society, and yet they must remain independent of both. However, in reality many non-governmental organizations are not aware about the existence of NHRIs. There was agreement that there should be more effort in both directions – looking for and spreading the information.

The last day of the FRA Annual meeting was dedicated to the presentations of the FRA’s upcoming projects and the ideas that are to be developed.

Participants shared valuable experiences concerning their work in cooperation with local authorities. Fulfilling fundamental rights is a shared responsibility across all governmental levels. Local and regional authorities are responsible for many policy areas which have impact on people’s fundamental rights. People explored the challenges and opportunities for non-governmental human rights organizations to work together with local authorities. Good examples of effective partnerships to promote and protect fundamental rights at the local level were shared; however it was clear that there is still a lot to be done in order to make local authorities design services based on the human rights approach.

One of the presented FRA projects was on the political participation of persons with disabilities. It aims to promote and explore the political participation of persons with disabilities and will focus on developing and populating indicators related to persons with disabilities’ participation in the political process, with a particular accent on voting. The findings of the project will be published to coincide with the European Parliament elections in the Spring of 2014.

Important information was added with regards to the last report from the first FRA disability project ‘Fundamental Rights of Persons with Intellectual Disabilities and Persons with Mental Health Problems’. In September a report will be launch on the legal capacity of people with mental health problems and people with intellectual disabilities. This report will analyze the current legal standards on legal capacity across the EU, set against the backdrop of the experiences of interviewees who have had their legal capacity removed or restricted. The FRA report will reveal the gap between the promise of the CRPD and the reality disabled people face in the EU every day, and by doing so FRA hopes to contribute to closing that gap.

At the end of the meeting the work of the Advisory Panel was presented. The Advisory Panel (AP) is the “bridge” between the FRP and the Director of the FRA; it helps prepare FRP meetings, consultations and other activities. The nature of the AP is consultative. It consists of nine members. We were very pleased that Ms Jamie Bolling – Executive Director of the European Network on Independent Living (ENIL) was elected as a member of the Panel last year.

At the event hard evidence and facts were presented to show that in the twenty-first century European discrimination and even violence is still a reality for many people. People need encouragement to speak out about their experiences. It is a well-known fact that the vast majority of victims, both of hate crime and of non-discrimination do not report what has happened to them.

In conclusion it can be said that the FRP meeting was a very productive and inspiring event with a lot of food for thought. It provided opportunities for everyone to learn more about the FRA’s activities, to exchange knowledge of promising practices, and to build new partnerships. Issues that are key to the current fundamental rights debates were openly and critically discussed and the event was a great opportunity to raise awareness on the Independent Living Movement and the right of people with disabilities to have control over their life.

This is the largest and best attended Summer School on international disability law and will again bring together leading international activists, policy-influencers and others connected with the implementation of the UN Convention on the Rights of Persons with Disabilities.  In 2012, the Summer School attracted over 100 participants from 29 different countries around the world.

The theme this year will be VOICE (restoring full legal capacity) and CHOICE (achieving community living in accordance with the wishes and preferences of the person).

No prior knowledge of the convention or law is required.  The programme will have many practical exercises to get participants thinking about the meaning of the convention and its practical relevance.  The teaching faculty is drawn from around the world and includes many involved in drafting the convention.  Participants usually come from over 20 countries including Africa and Asia which is a learning opportunity in itself.  This event is open to all and especially those interested in strategies to give power back to people with disabilities over their own lives.

For more information, please visit the website at http://www.nuigalway.ie/cdlp/Summer_School_2013/summer_school_2013_info.html

or please email: disabilitysummerscho@nuigalway.ie

Women Enabled Inc. has analyzed the CRPD Committee Country Reports to assess the efforts being made by the CRPD Committee to advance the human rights of women and girls with disabilities.

Stephanie Ortoleva, President of Women Enabled, Inc., assessed the situation as follows:

“Based on our review of the 6 countries for which the CRPD Committee has issued Concluding Observations ( Argentina, China, Hungary, Peru, Spain and Tunisia) Women Enabled Inc. concludes that the coverage of issues concerning women and girls with disabilities should be substantially enhanced with far greater depth and consistency. We conclude that the List of Issues must be more comprehensive and reflective of the unique situation of women and girls with disabilities in each country, drawing on specific Articles of the CRPD  and on issues posed in shadow reports. ( Note that we did not review Shadow Reports so are unable to conclude that Shadow Reports in the countries we reviewed may have, in fact, provided greater depth upon which to draw.) We finally conclude that often the CRPD Committee did not address in its Concluding Observations issues it raised in its own List of Issues posed to the States Parties, a great opportunity lost.

We recommend that the CRPD Committee develop an in-depth general List of Issues regarding women and girls with disabilities based on all relevant articles of the CRPD from which it can draw in tailoring specific Lists of Issues for each specific State Party and use State Parties’ responses to this List of Issues in drafting its Concluding Observations”.

For more information and to read the analysis of the CRPD Committee’s Country Reports, the CRPD Committee’s List of Issues and Concluding Observations for each country,  please visit Women Enabled’s website at www.womenenabled.org.