Part of a Whole

My name is Nicolas Steenhout.
I speak, train, and consult about inclusion, accessibility and disability.

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Our Homes, Not Nursing Homes

Toni died in a nursing home last week. Toni was like a grand-father to me. He dealt with several disabilities, left over from a stroke he had in the 1980’s. His frail elderly wife was taking care of him, but it just became too much. She could not care for him anymore in their home, no help was available for them, he had to go to a nursing home.

This post coincides with Blogging Against Disablism Day.

I have so many fond memories of Toni from when I was growing up. I remember a man who always dressed impecably, was generous to a fault, loved his food, and had a great laugh and joy for life. I was lucky enough to have gone and visit him recently.

Blogging Against Disablism Day, May 1st 2013

He had a stroke in the mid 1980’s. This made his speech difficult to understand, his gait wobbly at best. He did not lose his ability to think – he was ALL there. Of course, as he aged, things became more difficult for him. Less and less stable on his feet, more dependant on assistance to do little things. His heart was good, ticking regularly and strongly. Nothing wrong with his heart.

Some might say he had no quality of life during those three decades. I know he would have begged to differ. Sure, he missed being able to do things like he used to, but he had a *good* life. He had his chair, in front of his TV, with control of the remote. He had his routine Campari drink at 4 pm. Good food on the table, sole and filet mignon making regular appearances on the table. His wife bathed him every day. He had the occasional physiotherapy visit at home. He continued to dress well, often wearing a suit and tie at home, even if nobody was expected. He was passionate about his football club, Anderlecht, and you’d have been hard pressed to ask him a question about the club’s performance in the last 50 years and have him not know the answer. Toni had as good a life as was possible.

His wife is a tiny bit of a woman. Elderly and getting frailer by the day. She has skin that is transluscent, a bit like porcelain. She recently broke her arm heling Toni get out of bed. This was a strong indicator that things couldn’t go on as they had. They sought help. There was not much help available to them in their home.

In the end, Toni had to go in a nursing home. Where he was parked all day in an old, rickety, uncomfortable wheelchair, too far from the tv to be able to hear it properly, and in any case, they didn’t play the channels he was interested in. For three weeks he had no access to news about his cherished Anderlecht – no play of the matches on tv, no radio, the wrong newspapers. For three weeks he was fed third rate nursing home food.

Toni had a heart attack four days ago. I think he died of a broken heart. Because he was warehoused in a nursing home. Because there were not enough support available to keep him in his own home.

Our society prefers to warehouse our elders and people with disabilities in nursing homes rather than provide the right support to help people stay in their own homes. That is pretty obvious disablism if you ask me.

As I’ve chanted at many ADAPT protests: “I’d rather go to jail than die in a nursing home!”

Ga Anderlecht! Ga Toneke!