"Every Family With a Handicapped Child Becomes a Handicapped Family"

Domenic Lawson recently wrote about advances that may eventually lead to a cure for people with Down syndrome, like his daughter Domenica.

Yet imagine if someone at Johns Hopkins or Washington really did discover a way of therapeutically removing all the extra genetic information within the 21st chromosome that causes the mental disability within the person with Down’s. Would this be an unmitigated blessing for either the child or its parents?
You might think so: but in a recent survey of Canadian parents with Down’s syndrome children, 27 per cent said that if there were a ‘cure’ for their offspring’s condition, they would not use it, while a further 32 per cent said they were unsure if they would take advantage of it.

This result was described as ‘surprising’ by the New York Times — but it is not really surprising at all. My 17-year-old daughter, who has the condition, is what she is; and that is the person her parents and elder sister know and love. If she were genetically re-engineered, would she be the same person?

She would certainly be very different — with the ability to count or read a clock; possibly even to penetrate the secrets of calculus. But those are not the sort of attributes which define what we love in those to whom we are closest.

This drew an angry response from Meg Henderson, whose daughter Louise has autism and brain injury.  While she certainly deserves sympathy for the very difficult life she is leading, her response is so similar to those that I and other people who try speak positively about disability often receive, that I am going to take some time to look at it critically.

Like many people who insist that autism is a condition that needs a cure, she is talking about someone who is impacted by things other than autism. Louise was brain-damaged by physical abuse before Henderson and her husband adopted her. She has an undisclosed mental illness as well. I hope we all agree that brain damage is a terrible thing, especially when it is caused by abuse. Doubtless many of the things that make life with Louise difficult do come from her autism, but many parents seem unable to separate autism itself from co-morbid conditions. Saying autism can be okay is not saying that having constant seizures or painful gut problems is okay. Although those things often accompany autism, they are something separate from it, which is why they are not part of the diagnosis itself. I don't think anyone is saying we should not try to find treatments for seizures, I really don't.

Anyway, what is offensive about Henderson's piece is that because her life is unhappy, she insists that every family which includes a child with a disability is also unhappy:

I wouldn’t wish the hell we have endured on anyone. Because for many average families such as mine, having a handicapped child is hell. You enter a black tunnel from which you never escape.

Mr Lawson says that having Domenica — whose godmother was Princess Diana, a family friend — has taught him wonderful life lessons.
I’m sure this is true for him. But I must confess that I am tired of hearing about devoted parents who say that seeing the world through a handicapped child’s eyes is a blessing.

Please forgive me for sounding so cynical, but I’m convinced that parents say this only because they need to find something positive in their difficult, if not miserable, situations.

Let me tell you the unvarnished truth based on my experiences. There is nothing positive about a child’s life being limited by physical or mental difficulties — not for the child, and not for its family.

Every family with a handicapped child becomes a handicapped family. That is a fact.

She has an absolutely valid point that it is easier for families of privilege to enjoy a child whose care is expensive.  I'm pretty sure, though, that Princess Diana was not godmother to 27% of the children with Downs in Canada, who Lawson said would also reject cures for their kids. It's entirely possible that if the children of all those parents had the same sort of challenges that Louise has that they would all want their children to be cured. They are probably more fortunate than she is, and I can understand being jealous of that. But I don't think that entitles her to deny that their experience is real.

She describes her life as a living hell for her entire family but also describes suing to keep Louise from being put into a boarding program. I understand the desire to keep a child at home at all costs, I really do, and I respect it. But Henderson is very angry, and I think getting Louise away from that anger was probably a good goal.

The saddest thing is that her mom is still so angry when Louise seems to be in what many parents would consider an ideal situation for someone with her challenges:

She is now 34, yet will never have her own home, marry, have children, a job or drive a car, and I see nothing on that sad list I wouldn’t change if I could. Wouldn’t any parent?

Today, our daughter lives in a special village near our home in Fife. It’s a wonderful, leafy campus, staffed by trained carers, set up to house adults with handicaps of every type. It has two farms, various workshops, a bakery, a cafĂ© and a supermarket — all run by the residents.

Louise does live the best life she is capable of, working in the bakery and the shop.

The local authority pays for Louise’s care, but like all parents in similar positions, we live in constant fear that government cuts will bring this stability to an end.

Louise has been there since January 2012, and for the first time in her life she has friends. Everyone there has some difficulty, and they all support each other.

There’s a closeness and friendship there she has never experienced from the general public, and never would. She is valued as a person, not looked on with the pity, embarrassment or ridicule that have marked her entire life.

So now she is happy — and so, for the first time, are we.

Even so, she often pops up in my d reams as a completely normal young woman, and I wake in tears because I know that she will only ever be like that in my dreams.

Again, our experiences are all different from each others. I can certainly do a better job of remembering and recognizing that, too. Your life is not like mine, and it is just as valid as mine. But mine is just a valid as yours.