One of my older sisters used to care for disabled children when she was younger. She once told me about a disabled child who had approached her and asked her: “Will I ever be able to get better?” My sister told me that she didn’t quite know what to say – especially since the child’s disability was a more permanent one than most, and caused the girl to not be able to walk or use her wrists and fingers. Even though I wasn’t there when this exchange occurred, the sad look in my sister’s eyes when she told me about it made it a moment that I’ve never forgotten.
I think it’s because I know what it’s like to think about those kinds of questions: Questions no doctor, parent, or carer can truly give you an answer to. Important, life-changing questions, which are often tinged with a slight sense of wide-eyed innocence and curiosity like that girl had. ‘BIG’, uncomfortable disabled questions; the kind that every disabled child thinks about. Sometimes people answer with statistics, some with science, but the most honest answer is almost always: “I have absolutely no idea. And there’s no real way of knowing.”
Here is an example of eight such questions:
(1) Am I more likely to die earlier because of my disability?
This question is the one that inspired this blog post: Last week, for the first time in my life, someone asked me if my disability could kill me. The answer is no, but still – it got me thinking. I’ve heard stories of people with disabilities dying at extremely young ages due to medical complications. According to a study done in Asia, there is around a twenty-year gap in-between the average life expectancy of disabled people and the average life expectancy of non-disabled people (source in the research citation below).
This statistic doesn’t scare me much (as statistics rarely do) but it did make me think about this question for the first time. The truth is, I might not be able to live as long as my grandmothers who are still around today spending time with their great-grandchildren. But I also might – no one knows what the future holds. That’s what makes it an answerable, head-scratching, ‘BIG’ disability question.
(2) Will my condition get worse (can it get better)?
This question is one that worries me the most, especially as someone with a progressive disease. I went from basically being able-bodied to losing the ability to walk, having my fingers curled, and losing my ability to grip objects or use my wrists. The question is: will it get any worse? I have faith in the state that I’m currently at, and my condition hasn’t been this stable for a while; but at the same time, I know how easy it would be to wake up tomorrow with another part of my body shut off from me. I’d do anything to get an answer to this question – to not have to worry that in a few years I might lose even more of my independence. I try to treasure the use of my arms and my upper legs every day because I know how easy it can be to take things like that for granted.
Over the years, some doctors have tried to tell me that there is a small change that my condition could improve in the future. I doubt that this is true in my case – I know my body too well. But I’d love to be surprised.
(3) Can I have children? Will they be disabled like me?
From what I’ve read online, it seems like this is a question that quite a lot of disabled people wonder about. I faintly remember a doctor telling me that there’s a large chance that, if I choose to have children, they will also have my genetic condition. So at least I know that it is possible for me to have children. They will probably have my disability, or a more severe version of it, but I don’t care about that. I wouldn’t mind having a disabled child – and I think that I’d be able to give them valuable advice on how to live life with one based on everything that I’ve experienced.
Anyway, even though I know that it’s a long way off: if I do decide to have children in the future, I want to adopt. Not because they might be like me, but because I know that there are already so many children out there who need help. And because the idea of pregnancy does not appeal to me at all. I wouldn’t mind adopting a disabled child though. Naturally, this also comes with the question: will I be able to copulate? It’s one that has made all of my Sex Ed teachers flustered when I ask it.
(4) If I do have children, will I be able to take care of them myself?
I often wonder about this question. When we visit people who have just welcomed a baby home, I often need help to hold the baby since I’m not able to grip or cradle things. The idea of not being able to hold my own child in the future is a disheartening one. I can’t change nappies, I can’t cook or prepare food, I can’t clothe other people. I probably won’t be able to care for my own children or be left alone in a room with them without help. I’m okay with my partner doing most of the work, but it’s sad to think that I might have to hire a babysitter for when I’m alone with my children.
(5) How will I look when I’m older?
This is something that I started to think about when I was twelve-years-old. One of my friends became shocked the first time that they saw me with shorts on. They said: “Oh, you’re so disproportioned! Look how skinny your legs are! That’s so creepy.” I hadn’t noticed it before, but since I don’t have as much muscle in my legs – they are quite skinny. Now, as I’m starting to grow older, I wonder if I’ll end up looking drastically disproportioned. It’s clear to see that some of my body parts are growing while others are not.
(6) Will I ever be able to live on my own?
The answer is yes – but probably only if I’m rich. In order for me to live by myself, I’d have to hire someone to cook my meals, someone to help me dress, to help me wash, and to help me use the toilet, as well as someone who can help me to maintain the house by doing chores for me. If not, then I need to live with someone who is willing to help me out with all of this. And if I’m living with them – then I guess I’m not living alone. I love my parents, but I truly hope to be able to move out and become independent someday.
(7) Will anyone ever love me?
Don’t get me wrong – I know that I’m loved dearly by my friends and my family. But will anyone ever want to date someone like me? I’m not the kind of person who feels as if life is worthless without a romantic relationship. I don’t need someone out there to complete me – I already have everything that I need to live a great life within me. I won’t search for love, but if it finds me, then I wouldn’t mind it.
The question is: will it ever find me? My family assures me that it could happen, but seeing as most people my age tend to steer clear of me, it doesn’t look very likely to me. Because of my disability, I would probably be a rather demanding person to love. And while recently I’ve learned to love my body, it’s still hard for me to think of myself as ‘attractive’. After all, disabled girls are rarely represented as such in the media
(8) Will I be able to be hired by a firm?
I started to think about this question when an advertisement for a BBC documentary came on the television about disabled people who were being paid less, or were being flat-out refused by companies. I burst out crying after I saw it. No one had told me that it might also be harder for me to get a job than most other people. It was the icing on the cake for me when I had my depression: it was official, I was never going to be able to live a life.
While doing research for a future blog post about disability and crime, I also discovered how unaccommodating the legal system could be to people in wheelchairs. Serious cases were getting dropped by wheelchair-users because they were being humiliated by the system and because some courts refused to instal ramps or lifts so that they could even enter the building and get the chance to speak their minds. In general, it seems as if the future is going to be quite difficult for someone like me to get by.
I do feel slightly better about this question now that I have my first job. I’ve learnt that there are so many online careers and opportunities to choose from (including this blog). I also know not to be so scared of the future, no matter what it takes, I will find a way to live my life to the best of my capability. No matter how much people deny or refuse to accommodate things for me. I have my fists raised, and I’m ready to do battle with my future.
Now you have an idea of some of the questions that swirl around in the mind of a disabled teen. The future used to be the scariest thing in my life. But now that I have my first job as a freelance editor and I’m starting to feel more positive about life, I realised that I’m making my own future.
I can’t help thinking that I might have approached some of these questions differently if I had grown up around more disabled representation. If we showed more disabled people as parents, or as entrepreneurs, or as romantic partners, then I would have some idea of what these things looked like and wouldn’t be so uncertain about them. I know that I talk about it a lot, but this is yet another example of why representation is so important.
That’s it from me! Have you ever wondered about any of these questions or questions like these? See you next week!
Research Citation: Jinwook Bahk, Hee-Yeon Kang, and Young-Ho Khang, “The Life Expectancy Gap between Registered Disabled and Non-Disabled People in Korea from 2004 to 2017” NCBI, published online 2019 July 20, accessed September 27, 2020, The Life Expectancy Gap between Registered Disabled and Non-Disabled People in Korea from 2004 to 2017 (nih.gov)