Disability should not have to mean life stops for everyone but my parents feel guilty taking any time off from looking after my brother
Claire McGowan: 'If I could hope for one thing it would be that parents are not required to spend their entire lives caring for a profoundly disabled child.' Photograph: Donna FordI used to say that the most significant event in my life took place before I can even remember – the birth of my brother, David, with profound disabilities.
In the 1980s, we lived on the outskirts of a village, in a house that backed on to fields until a new estate grew up in the early 1990s. I acquired a sister, then another brother, both healthy. With four of us born within seven years, there was always someone crying or needing a nappy change, so the impact of David’s disability seemed less by then. As a child he was cute and doll-like, and could be pushed about in a normal buggy, often in a double with my sister or youngest brother.
I spent a lot of time as a child fighting on behalf on my brother, noticing the stares we got when we took him out, from both children and adults who should have known better. Correcting ableist language is something I still have to do today. We didn’t know not to use the term “handicapped” back then, so “the wee handicapped boy” was a common way to describe him.
One thing we took for granted somewhat 30 years ago was the level of care and support available. Respite was fairly regular, and relatives were more willing and able to look after a small disabled child than the difficult adult he has become. I have many issues with the Catholic Church, but they did provide care too, though I remember a nun at school pulling me out of class once to interrogate me on my home life and remind me how grateful I should be.
Then, when he turned 19, and I was away at university, feeling terribly guilty about not being around to help, a crisis cropped up. David had to leave his school and it seemed doubtful anything would take its place. My parents discussed one of them giving up work for good, and the mood was extremely sombre and difficult. As it happened, he did get into adult day care, where he still goes most weekdays, and is collected and left home in a bus with very kind drivers.
‘If I hadn’t a pal to distract me from the monotony of running, then Albert Square was going to have to do’
Ireland Latest News, Ireland Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
Tributes flow for young woman with 'beautiful smile' after 'untimely death'Ella O'Neill was in her early 20s and is survived by her parents, JJ and Josephine, brother, Darragh and sister, Aoife
Read more »
Avoid baggage fees with Amazon's 5-star reviewed travel bagThe bag is now being offered at up to 39% off the original price - perfect for budget holidaymakers looking to get the best value for every cent they spend on their travels
Read more »
7 Things Bound To Happen In The Celebrity Big Brother House7 Things Bound To Happen In The Celebrity Big Brother House 7 Things Bound To Happen In The Celebrity Big Brother House
Read more »
Poorer households hit harder by indirect taxes such as VAT, report findsReport by the Parliamentary Budget Office examines scale of such levies paid by Irish households.
Read more »
What properties sold for in Foxrock, Dublin 18A selection of the prices sought and paid in the current market
Read more »