Oireachtas Joint and Select Committees

Thursday, 4 November 2021

Joint Oireachtas Committee on Disability Matters

Aligning Disability Services with the UN Convention on the Rights of Persons with Disabilities: Discussion (Resumed)

Mr. Adam Harris:

The Deputy's remarks on language are as important. While language can seem like a small thing, it does inform the world we live in. We need to move away from language that stigmatises. Many of us prefer to say "autistic" because it takes it as a positive identity rather than a medical thing that can be taken away or put up or put down.

There are a few things that we can do. I accept that we have a patchwork quilt of services, which have emerged the way they have emerged, but within the system that exists there is a lot we can do to move towards a rights-based model. First, we could commence legislation on the Statute Book about giving people with disabilities rights. This country has a history of passing disability legislation and then not commencing it. A large part of the Disability Act 2005, which at this stage would need to be updated, has not been commenced. That is worth saying. The most radical thing we could do is to personalise budgets. Unfortunately, money is power. As long as we are giving money to services as opposed to individuals, we will not have accountability and we will not have people's needs at the centre. Systems will always fail and things will always go wrong. We need to look at how we regulate supports and services within Ireland. It is very much the Wild West within autism. Many so-called therapies and interventions are deeply harmful and dangerous for autistic people. We have heard of the problems with ABA and behaviourism today. There must be much greater regulation of these sorts of supports, so that our services deliver rights-based supports. Finally, we need the optional protocol so that disabled people have a tool when all else fails.

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