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If the electorate demands better disability services, politicians will be forced to respond

An attitude of benign support is not enough for people with disabilities and their families

Parents of children with special needs are 'battle weary' of endless fighting to be valued, to be seen and heard, to be accepted, and for services and supports.

Did the defeat of the care referendum in March (remember that?) usher in a new dawn for people with disabilities?

As many surely suspected at the time, it did no such thing. Having seen off what was interpreted as an attempt to water down the rights of people with disabilities, the post-referendum public returned pretty quickly to its pre-referendum state.

That’s one of benign support for the rights of people with disabilities – but it’s not something we get excited about in our gut. The ones who get excited, but too often with fear and frustration, are people with disabilities and their families. They have reasons for those painful feelings.

For instance, last month we had a warning that people with disabilities, and also older people, could become a housing “underclass”. This is because in housing provision by the non-profit sector, “the number of homes provided to older and disabled persons has declined in recent years,” according to Donal McManus chief executive of the Irish Council for Social Housing. “We can’t overlook older people, who are a huge growth area, and people with disabilities living in poor conditions with their parents. We can’t leave them to become an underclass.”

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As for education, the parents of children with special needs are “battle weary,” according to parent Lucinda Murrihy, writing in The Irish Times in February. What wearies them is “endless fighting to be valued, to be seen and heard, to be accepted, for services and supports”.

The number of special classes in schools has gone up very considerably since 2010 but, journalist and parent Victoria White says in the same article, “no school is currently resourced with occupational therapists, speech therapists, psychologists and other services, as the National Council for Special Education recommends”.

Not exactly a brave new world then.

And there is the issue of children with scoliosis, suffering greatly while waiting and waiting for surgery. Should parents have to complain publicly about that suffering in the hope of bringing closer the date on which the surgery is finally provided? Last month reader Tony O’Gorman wrote that “my granddaughter is still on the waiting list for scoliosis treatment. She is now 16. The Taoiseach, when he was minister for health, made promises to girls like her. Broken promises. How can young people have faith in the political system?”

Letter writer Tony O’Gorman asked, given the Taoiseach's 'broken promises', how young people could have faith in the political system

I’ve written before here about the Access for All Ireland account on X which highlights the problems that people with disabilities have in getting around when lifts are out of order at rail stations. (I haven’t seen as many complaints about this issue recently – hopefully this means an improvement and that it is not just coincidence.) We can all fancy a day out, especially as the weather improves, or we may just need to get somewhere for a purpose, but to be prevented by such a simple thing must be especially frustrating and disappointing. Then it’s more than “fancying a day out” and not having it: it’s your world getting smaller.

And then there is the big transition at 18 years of age from children’s to adult services. In a letter to The Irish Times in April, parent Aisling McNiffe wrote that her son Jack is being transferred “from a children’s disability network team to an adult disability team, which is not really existent”.

Those are indications of the huge challenges that confront people with disabilities – especially profound disabilities – and their parents.

The political system responds to what it perceives to be demanded by its electorate. Those demands depend, naturally enough, on what the electorate – that’s you and me – really wants.

Can we remain as interested in the needs of people with disabilities as we were when we voted ‘no’ in the referendum?

Or was that just a way of delivering a kick to the Government?

It looks like the big issues in the current local and European election campaigns are housing and immigration. To build on our vote of last March, I wish a third issue could join those two – namely disability rights and services.

  • Padraig O’Morain (Instagram, X: @padraigomorain) is accredited by the Irish Association for Counselling and Psychotherapy. His books include Acceptance – create change and move forward; his daily mindfulness reminder is available free by email (pomorain@yahoo.com).