Autonomy and inclusion for people with disabilities

Welcome address at the international conference on "Autonomy and inclusion", Copenhagen

Your Excellency,

Madam Minister of Social Affairs and Integration, Ladies and Gentlemen,

“When I was a kid I was scared to go out the door and be in public. I was very afraid. But now I am living in the community. Now I am free to go where I need to do my things and I am not scared anymore. I feel independent and safe.” These are the words of a 34-year-old man with disabilities who participated in our research.

Autonomy and inclusion. Choice and control. Dignity and equality. Most people take these for granted as part of their everyday life. But for many people with disabilities, these are often everyday dreams, everyday challenges, everyday struggles.

In the last decade progress has been made in putting disability rights on the political agenda; problems were identified, data were collected and, most significantly, an international legal framework was put in place. The UN Convention on the Rights of People with Disabilities (or CRPD as I will call it for short) entered into force in 2008. It  is  the  first  international human  rights  treaty signed  by  the  EU  itself  and  Mr Ciobanu-Dordea from the European Commission will speak of the significance of the EU’s ratification of the CRPD in his keynote address. The EU as well as those Member States that have ratified the Convention are now bound to respect the rights enshrined in the Convention at both EU and at national level; they should also ensure that people with disabilities actively participate in shaping relevant laws and policies.

 

The FRA is committed to work on disability rights providing evidence-based advice to EU institutions and Member States that can help them to respect, protect, promote and fulfil the rights of people with disabilities - by documenting the impact of laws and policies on the ground, and by showing how they actually affect the daily lives of people with disabilities.

So, what does the right to independent living mean for persons with disabilities?

First: It means more autonomy and inclusion,

•   Being able to make decisions about one’s own life is fundamental: a man who was under full guardianship told us “because of this I cannot vote and I cannot get married. I cannot sign an employment contract: I cannot work”,

•   Equally important is to be part of the community, to feel accepted, and not to be “scared to go out the door and be in public”, as another person told us.

Second: It also means more choice and control,

•   Being able to choose where to live and with whom echoing one of our participants who told us that what he really wanted was “his own key and his own front door”.

Third: It means respect of an individual’s dignity, and equality,

•   Being given the same chance as others of having your voice heard so that, “when  we  talk  about  the  situation  of  persons  with  disabilities,  their problems are not presented by us anymore, but by them,” as one of the stakeholders said in the interview.

•   And having a say in whether and how to be treated. Ladies and gentlemen,

 

The Agency’s work has collected evidence and analysed the day-to-day experiences of people with intellectual disabilities and people with mental health problems across the EU. Our work shows that many policies, laws and initiatives have yet to deliver. Our work provides the evidence on which we can build a society that is more open, more inclusive and more accessible. We need to take stock, listen to what people with disabilities are saying and plan how best to break down the barriers that stand in the way of everyday inclusion.

Our research has also captured some of the consequences of austerity measures resulting from the economic crisis on people with disabilities. We face a risk of losing the benefits of progress made, if austerity measures are not designed taking into account the needs of people with disabilities for living independently. This includes personal  assistance,  day  centres,  personal  budgets,  education  and  employment support, self- and peer-advocacy organisations.

Our  reports  spell  out  clearly  what  needs  to  be  done  at  EU  and  national  level. Protecting and fulfilling the rights of persons with disabilities is not just about putting in place the appropriate legal instruments and safeguards, but also about ensuring that society itself is prepared to support the full and equal integration of persons with disabilities.   There   is   a   clear   need   for   support   that   empowers   individuals. Empowerment does not necessarily require a great financial investment. The people we interviewed called for a change in attitudes, for a change in the way policies are developed. The reports we present today show the impact of legal reforms that are taking  place  nationally.  These  measures  are  encouraging  steps  on  the  path  to autonomy and inclusion.

Ladies and Gentlemen,

A woman we interviewed said: “to live like you just exist is not what living is about.” So over the next two days, let us explore together what “living” should be about for people with disabilities.