Mr. Peter Kearns:

The Independent Living Movement Ireland, ILMI, very much appreciates the opportunity to contribute this spring afternoon. Unfortunately, I will start by saying that given the importance of the Bill and the scale of the legislation, the timeframe placed on responding by January this year placed undue burden on disabled persons organisations, DPOs, such as ILMI and others, to organise proper collective, participative spaces to fully review the legislation. It was a great chance to contribute to the discourse around the legislation but we were under undue pressure in terms of time.

I will follow up by telling the committee what the ILMI is. We are a disabled persons organisation run by disabled people. Our board is made up of disabled people and our members are disabled people. We also work with the social model of disability and the medical model. I gave a workshop to Sligo County Council this morning on the medical model and people with cerebral palsy. The medical model focuses on the impairment label, whereas the social model focuses on the disabling barriers that restrict us from taking part as citizens in the mainstream or in our local communities.

We feel that the current assisted decision-making (capacity) (amendment) Bill lacks any effective references to social model language and values. Over the years, we have pushed for recognition of words and language in terms of the Bill. We also feel the Bill needs to recognise the disability equality role to support disabled people to fully make decisions that will impact on their lifestyle choices. We feel that specific reference needs to be made to the role of the Assisted Decision-Making Capacity Act to ensure the autonomy of all disabled people is upheld. That autonomy should be over and above any impairment label or baggage that goes with that impairment label.

ILMI appreciates that we do want the necessary amendments, as the Bill includes a number of necessary amendments to enable full commencement of the Act. However, there are issues that we would like to address, especially around the role of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. As a DPO, we see that as having the potential to really enable the Act or the idea that the Act is an active one with all headings being made with reference to the UNCRPD.

Also, because we are a disabled persons organisation and are working on the social model, the intersectional aspect of disability equality and its impact on the Act could be explored in terms of the day-to-day roll-out. Intersectionality refers not only to disabled people, but to gender, class, ethnic background, religious belief, family and socioeconomic status. The assisted decision-making (capacity) (amendment) Bill has that recognition of the intersectional role and how it is carried out.

With that idea in mind, I would like to give my own experience of intersectional and impairment-label baggage. When I was 15 years old, I thought I had escaped a State special school.

From the age of two until the age of 12, I was in a special school in posh Sandymount. Every day I got a special bus from Coolock to Sandymount, so that has given me my lofty ideas. At 12 years of age, I managed to make my way to Ballymun comprehensive, which was the first secondary school built with access for disabled people. At the age of 15, I was quite cool. I was in third year and had long hair down to my shoulders but, suddenly, my parents got a letter in the post saying that I had to be brought back for a day to the special school. We went back for a day and found out that a top respected psychiatrist was suggesting that - this was the late 1970s - a new drug had been discovered that would help me with my impairment labelled cerebral palsy, CP. That new drug was valium. The psychiatrist said I was supposed to take this new drug. At 15 years of age, I had already seen that disabled girls and boys who were on the drug were uneasy, lethargic and depressed. Addiction to the drug was long known; it was known that valium was an opportunity for addiction. I pushed against it, even though my mother, on the psychiatrist's suggestion, hid the tablet in my porridge or mashed potatoes. I found it and pushed against it. Eventually my parents decided this was not going to work. They dropped the idea and pushed him to change the drug. That drug then disappeared off the radar in terms of disabled people. It just shows the experience of disabled people. There is a clear requirement that disabled people on the ground with an impairment can have the choice not to have to take treatment suggested or even heavily pushed by so-called experts.

Also, the other thing about will and preference is that will and preference can quite often go against the best interests and duty of care. In terms of my own best interests and duty of care, I eventually got into Dublin City University, DCU, but I chose to drop out. That was against my interests. I chose to work in an anarchist theatre group for two years in Amsterdam. That was definitely against my best interests. I came back and did an English literature degree in Trinity College for four years. It was a fantastic four years but there is not much work with an English degree, so that was definitely against my best interests. The idea of will and preference being far more important to disabled people than so-called experts or professional best interests needs to be recognised as well.

Under the UNCRPD, there is the connecting of the different articles of United Nations conventions. In this context, Article 12 deals with equal recognition before the law and Article 14 deals with the liberty and security of the person. There needs to be specific reference in the assisted decision-making capacity, ADMC, legislation to the aim of the legislation to ensure the autonomy of disabled people to live the lives of their choosing, so the legislation states one will be entitled to different paths from the so-called best interests. The ADMC needs to support that.

Then there is the DSS access. Any additional costs are highlighted in the cost of disability research. Disabled people have €9,000 to €12,000 extra costs per year on top of their expenses. Any additional cost to access the ADMC should be recognised and supported so disabled people can successfully and effectively exercise their rights under the ADMC. As a disabled persons organisation, we recognise that the Assisted Decision-Making (Capacity) Act 2015 was there to help the UN ratification in 2018. My general opinion is that the ADMC has great potential to reflect the UNCRPD. I worked on the UN convention in New York during the 2000s with the DPOs and NGOs in the basement of the UN building. Human rights is always at the forefront under the obligations of the 2018 ratification. We feel that ADMC should really reflect that human rights narrative pushed by the DPOs and NGOs when they were working on the convention nearly 20 years ago.

Also, the DPOs should be recognised as having a role in respect of ADMC, as well as equal recognition before the law, liberty and security of the person. We also would say regarding the DSS in terms of practice and codes of practice, it is a great opportunity for capacity building and enabling the Disability Support Service to encourage and facilitate disability equality training for dominant care, disability equality training for family members and guardians and disability quality training, more importantly, for young people and disabled people requested from the DSS.

In conclusion, I thank the committee for the opportunity and encourage any questions. Our philosophy is "Nothing about us without us" and "Rights not charity". What we want is will and preference in terms of living choices, an active and early lifestyle from baby right up to teenager, young person and adult - will and preference at every life stage - and that the agencies recognise that. Independent living is a jigsaw. It not just one thing but a number of things that fit together. The jigsaw includes messy ideas, messy decisions and mistakes as well. Will and preference for disabled people is not just always a clean and simple policy; it is a journey and an exploration. As I said, I am very thankful for this opportunity and will answer any questions.