Many people do not like themselves, or their children, being labelled in terms of disabilities. I often hear people say that they prefer to say that my child has Autism as opposed to they are Autistic. But when faced with the question as to whether they would “cure” ( I prefer remove) the disability or not, the answer in my experience is often no. It seems that there is some kind of acceptance that the disabilities are part of who the person is, and if you were to remove the disabilities it would be like removing a part of that person.
People with Disabilities are special in their own right
I have to admit I can see how my children’s disabilities make them special, in a different kind of way to my children that do not have disabilities. They can bring so much warmth and happiness to the World, teaching us a thing or two. With my own son’s developmental delay he really has taught me the beauty of the small things in life (for example he is just zipping up his own coat and pulling the Velcro across on his trainers).
In many respects I can see how my oldest son having Asperger’s Syndrome has many advantages. I do not think the nastiness of some people is as obvious to him, which is beneficial to him as he’s not as easily hurt. As a parent I find that once we established the routines, the boundaries and the wants, that he is a pretty dam perfect teen. He is doing well and so very focused academically – it’s all very black and white, he is meant to try hard to get where he wants so he does. I am lucky in that I do not to have to worry about him doing things like NekNomination, because it is not a safe kind of behaviour.
Also my children without disabilities have to be aware of the additional needs of their siblings makes them special too– more tolerant, patient, kind, caring and understanding. So I can see the argument for not taking away the disabilities.
Reasons for taking away the Disabilities
Having to anticipate seeing again some of what my oldest son has been through, when he was younger, with the fresh eyes of his youngest brother makes me think I’d rather not have to go through it again (for me or for him). From the very basics of feeling I have to justify my parenting choices, to wondering whether he will ever properly be able to communicate his wants and needs to others.
If the disabilities could be removed then the fear for the future would be less (I mean every parent worries about something, don’t they?). Just wanting to know that he stands a good chance of happiness when he is older? Will he be able to learn enough, will he ever be able to take care of his basic needs (diet/toileting, keeping himself safe), it would mean him not being vulnerable and misunderstood by people. Not wanting him to be excluded and different (even at this basic level of not being able to access the curriculum without support). These are the very reasons I fight for every bit of support to help him find as normal way as possible through life’s pathway.
Hope for the future with Disabilities
My sons’ disabilities are not going to go away, I just want to add that I am hopeful for the future. Seeing how far my oldest son has come, with the right support is amazing. My youngest has even more support than my oldest did and is coming on in leaps and bounds. But if I could make it so that they did not need that help then I would. I guess it also depends on what the disability is, but to me taking away the disability does not take away the person – you would let your child have their tonsils taken out if they kept on having tonsillitis – wouldn’t you?
So do you think that disabilities make the person or would you remove them if you could?
Can’t join in with the study I’m afraid – but excellent post. I would gladly lose the ADHD and ASD despite it “making” my son whom he is. He’s not happy and is really struggling.
I can’t take part in the survey but I do believe we are all who we are destined to be. You have so eloquently described all the warmth and happiness they bring and teach you to appreciate, so maybe they are perfectly designed to help you too? x
Such a thought provoking question Joy. I can’t comment, not being in the position, but yes when Kitty couldn’t hear because of her glue ear that was corrected, when tonsillitis blighted me as a child they were removed.
gosh i do not know where to even start with that question. like you said depends on the disability i guess. imagine to be able to give someone the power of sight? that would be pretty amazing wouldn’t it?
Such an interesting post.
On the one hand, of course I would do everything possible to remove my son’s disability. If I could magically “fix” his heart and make it whole, and give him a long, healthy life, as every parent wants, I would do it.
But, in reality, as we are living “this” life, then I cannot imagine it any other way. He would definitely be a different boy if he had been born with no disabilities, and if you asked me to swap my son with a different boy, of course I wouldn’t.
There is a bit of “chicken and the egg” with Danny as well. We have been told by some that one of the reasons he survived his early ops, was because he was born stubborn and this helped him live despite the disabilities. Or, is he stubborn because of the disabilities.
With regards to his Autism, although I wish school could be easier for him, it is part of “him” and I love how his mind works and how he is such an interesting person.
He also has special qualities because of his disability and his sisters are definitely more caring to others as a result too.
xxx
I agree with all of this, great points! I would take away the autism if I could, purely because of that worry about what life will be like for them as adults. In our case it’s us who take the brunt of the worry, as our girl is pretty happy and fairly unaware of her disability – so far. I can see that this will change and have no idea how we will cope with this, but of course we will! x
Oh goodness, what a very hard question to ask indeed! Of course “they make the person”, but do family circumstance, upbringing, “bad things” that happen to people not also make the person?
Life chucks all sorts of things at us and it is how we deal with them that makes the person. But I never wish any of those things upon people, if that makes sense?
What a tough question, and I don’t really know the answer.
I think you are AMAZING though. xxx
Sometimes I would say yes only so that he is accepted in certain situations and can cope better but other times no because that is all we know and at 9 it is who he is.
I don’t really think there is a defining answer to this question.
Since ‘A’ was born and the subsequent surgeries and now incontinence that has followed, I think I would have given anything to make him better or to take it all away. However, I’m also aware of how these things have shaped the person he is now and in many ways they’ve shaped my own life in unimaginable ways.
I can’t comment from personal experience but I can see how many disabilities often have such far reaching and subtle implications beyond their most obvious ‘symptoms’ (for want of a better word) that if must be hard to separate them from the person. A really interesting post.
Such a thought-provoking post Joy.
great post lovely. i can’t imagine being in the situation but i only know that…whenever my kids are in danger or feel weak i could go crazy.
Unfortunately I am unable to take part in the study. I do hope that the many people who read this post are able to help in some way.
I believe that a disability does make that person special in their own way, whilst we would love to ‘fix’ it would change who they are.
I think that we would never change a thing about any of our children unless it would make them happier and / or us cope better to be able to make them happier, but I am not qualified to speak of such. You are a wonderful, amazing, insightful, very patient and clever mum and they are lucky to have you to help them reach their potential on every level XX
I like to think that if my children lost their special needs they would hang on to all the good stuff and just lose the things that make their lives difficult, like severe anxiety, anger, lack of social skills, sensory problems, lack of speech, limbs that don’t work, lungs that were never properly formed and all the rest x
I have to say that as someone who is considered disabled, I am very aware that I am a very different person to who I would be if I hadn’t had to learn to live with the health challenges I have. Would I wish to be less sick, able to do more, and not have to fight so damn hard to do everyday things? Well, yes, of course I would. But equally, would I want to trade in the determination and compassion I have as a result of this? No, I’m not sure I would…
And I say that after a lot of consideration, because life is hard as someone with disabilities. Right now my husband and I are fighting the DWP on multiple fronts, as both of us are disabled and our son has Autism. Life is hard on so many levels and we just wish we could get a break. BUT I also see the care and compassion that my 6 year old son has because he has grown up knowing that our health issues and disabilities don’t define us, even though they are a part of us. And that is something I know will help him through the years as he tries to navigate the world in which he is seen as “different”.
My husband and I have also talked about fostering on and off for most of the time we have been together. We are too sick right now to do that, but we still hope that one day our health conditions will be more controlled again and we’ll have that opportunity. Our son is desperate for a sibling, as he loves people SO much, and we can’t give him that. But I do think that one day, when he is older, he would love to help us offer a loving and safe home for someone who needed it just as much as we would. Because he knows what it’s like to struggle and need that extra bit of care and acceptance. And that is a gift that I don’t think any of us could truly appreciate in the same way if we hadn’t faced the challenges we have, both individually and as a family.
So would I prefer not to have disabilities? Yeah, in terms of making life easier I would. But would I be the same person without them? No, I’m not sure I would be, and in many ways I’m actually not sure I’d want to trade who I am in.