I am a parent of three children with congenital metabolic disorder, additionally, one of them is a teenager with Autism Spectrum Disorder and intellectual disability, who requires supported decision-making. When my son was a child, I joined the disability right movement. He was removed from the kindergarten, from professional therapy for ‘bad behaviour’. He was not taken on trips at school. We had to ask for everything. With a group of parents of children with disabilities we fought for a place in a local school, even though our children were legally eligible for inclusive education. The law was on our side, but the reality was not.
However, it is even worse in adulthood. If you are ‘productive’, you and your employer will receive support. And that’s great. Work is a chance for a decent life, also for self-realization, social connections, etc. However, what about self-fulfilment, activity and social inclusion of people outside the labour market? If you need more intensive support and you don’t work, usually you stay locked with your aging mother in four walls or in an institution. You are deprived of legal capacity, subjected to forced treatment.
Motivated to address inequality
I’m currently the Vice-President of the Polish Disability Forum, an umbrella organization, member of the European Disability Forum (EDF) and I cooperate with many organizations dealing with the various rights of people with disabilities such as the right to inclusive education, the rights to open labour market and social security, political rights, the right to information, communications and other services, including electronic services, as well as augmentative and alternative communication. I’ve been involved in the preparation of recommendations, framework of strategies also programs for persons with disabilities and drafting legal acts in these areas.
Personally, I’m motivated by the need to address inequality and the marginalization of the rights of persons who require more intensive form of support and supported decision-making. The States Parties’ legal systems continue to feature institutions that restrict the civil rights of persons with disabilities that refuse to recognize them or that authorize institutionalization and forced treatment with regard to persons with disabilities. The authority and competence of the Convention on the Rights of Persons with Disabilities (CRPD) Committee are crucial in this area. These matters still require a stronger international voice, cooperation and harmonization of the CRPD Committee’s work with other treaty bodies and international organizations of persons with disabilities, civil society organization, including research institutes, service providers and other private stakeholders .
Priorities as a candidate
I would like to be involved in the work on strengthening and promoting Articles 12 and 19 with their general comments, as well as in the work on the draft general commentary on Article 28. The CRPD underlines also the role of the family and the duty of the State in supporting the family. Leaving families on their own, without systemic support, causes their marginalization and social exclusion, and consequently – considerably limits the chances that the person with disability will be able to lead an independent life as an adult.
I see the need to strengthen the CRPD Committee’s work on ‘progressive implementation’ provisions in order to establish ‘minimum core obligations’ of rights and programs targeting to persons with disabilities. I’m going to do everything possible to include persons with developmental and intellectual disabilities actually in the mainstream of social life.
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