‘What disabled people want is the same ownership over our lives that non-disabled people take for granted’

I am proud to say I am a disabled man who has lived my life on my own terms. I chose and was fortunate enough a long time ago to fight for what I believed to be rights for me and for my companions in disability.

Simply put, I am an activist, and I felt compelled to write this short piece after reading an article published in The Irish Times last month: “As a full-time wheelchair user facing numerous challenges, my bedroom has slowly become my world over the past three years.”

A young woman who was employed, active both in her social life and community, writes she is imprisoned in her own home because her supports have dried up. My boiled over anger writes into a raged response.

Every year, millions of euro are pumped into what I must refer to sadly as “the disability industry”. Despite the growing financial commitment of the State, our media is replete with so many disabled people forced to share their personal stories showing how no one seems to get the right support at the right time.

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We cannot continue to tolerate a situation where disabled people and families with disabled children have to regularly turn to national press and social media to have their voices heard

I am sad to recount that I am long enough engaged in the realm of service provision to have witnessed the slow decay of meaningful policies – and to have seen supports descend into a bureaucratic lack of joined-up thinking and cross-departmental “muddle”.

Of course, there are good people and patches of excellent services fighting through the treacle of slow, unresponsive provisions that make up what disabled activists in Ireland today regard as the self-sustaining industry of disability. It is one born out of the charity model of 19th century poor law with its work houses.

In terms of what disabled people and the families of disabled children are accessing, we as a country seem to be going backwards and leaving so many disabled people behind.

I am the chairperson of Independent Living Movement Ireland, a national cross-impairment Disabled Persons Organisation (DPO). Despite signing the United Nations Convention on the Rights of Disabled People (UNCRPD) in 2018, we are still mired in highly bureaucratic systems where decisions made about our lives and the supports we need to participate in society as equals are made without our involvement. We have billions spent each year, often on outdated ways that – despite reviews and commitments to “move on” and promote value for money – are resistant to change. There is rhetoric about services being “person-centred” that are anything but person-centred, unless it is a shorthand for the protection of the status quo dissembling in a borrowed language of change.

For many disabled people, the web of support systems has to be learned and its contradictions and broken promises have to be navigated from one disappointment to another.

There is no clarity on where to access what you need. And many people don’t even know as disabled people that there are supports that could allow us to play more active roles in our communities and society, in terms of education, employment, social and cultural activities. Out-dated systems that separate us and segregate us are invested in, as opposed to supports that liberate us with rights to exercise choice.

What disabled people repeatedly ask for is the same ownership over our lives that non-disabled people take for granted, and to make this possible we want appropriate assistance made available – whether that is accessible housing, assistive technology, mobility aids, accessible public transport, employment supports or personal assistance services. Accessing what we need at any one point in time is layered with so many delays or points of approval that such supports are meagre or don’t arrive at all.

Last summer, the Department of Health published a Disability Capacity Review which set out proposed State investment for the next 10 years in disability services. Worryingly, the report was made without referencing what disabled people need and want. It is based on continuing to invest in the particularised “disability industry” which perpetuates a situation where disabled people continue to be in the client ownership of agencies titled by disability type, segregating disabled people from one another and from society. Little or no regard was referenced to policies to invest in ensuring our full inclusion in society with the supports disabled people need to do so.

The Disability Capacity Review failed to disassemble the network of service providers to search for and realign the provision of supports into a new availability across disabilities and away from an antiquated and costly model of services built off a charity model created back when the state was not there to manage and direct assistance and support to disabled people.

Further investment in broken systems that have failed disabled people must not be allowed to continue, meandering from report to report on the same deficits without concluding in meaningful outcomes and improved levels of assistance.

We cannot continue to tolerate a situation where disabled people and families with disabled children have to regularly turn to national press and social media to have their voices heard because the system is so appallingly failing. We all know it is failing us, what we need is clear strategic thinking about building a rights-based system based on meeting our needs to live our best lives as equals in a genuinely inclusive Ireland.