Asking the ‘BIG’ Disability Questions

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:

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(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.

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(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?

A picture from the BBC show Employable Me

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.

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😊

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!

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Research Citation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6678634/#:~:text=Between%202004%20and%202017%2C%20life,and%204.6%20years%20in%20women

Image Citations: https://www.pagepersonnel.nl/en/advice/career-advice/interview-tips/tough-interview-questions-and-how-answer-them, https://www.123rf.com/photo_101375865_stock-vector-disabled-man-in-wheelchair-reading-a-book-rehabilitation-of-disabled-people-concept-vector-illustrat.html, https://nl.pinterest.com/pin/423479171201611951/, https://www.bbc.co.uk/programmes/b09hzr2r 

16 thoughts on “Asking the ‘BIG’ Disability Questions

  1. Another eye-opening post! I’m sure that you will be able to do anything you’ll set your eyes on (with some adjustments), but of course the catch is, you’ll have to work twice as hard. But I love your determination. It’s great that you’re working as a freelance editor!

    Liked by 2 people

  2. Love it! Yes, I have definitely had some of these questions over the years including mortality, old age and child-bearing. Sadly for me, because my husband’s mother had two of the same disabilities that I have, there is an increased chance that our children will be disabled and so we made the very difficult decision not to risk it. I do worry about my care when I age but then I’m also of the opinion that if I worry too much about it, I will get there a hell of a lot faster! Great post as always, so insightful and uplifting. The world needs more people like you! Xx

    Liked by 2 people

    1. Thank you 🙂 You’re completely right about worrying too much, there’s not really much that we can do other than carry on living and handle things when we’re presented with them. It may have been a difficult desicion, but I’m happy that you both managed to come to an agreement that your both comfortable with (and your dog is adorable by the way 🙂 ) “The world needs more people like you!” Thank you so much – that truly means a lot. ❤

      Liked by 1 person

  3. Great blog post! I have definitely wondered about some of these questions for myself. I loved reading your thoughts on them. I agree with Mrs Wolfie, the world needs more Simones 😊. And a wholehearted yes to more disability representation! I hope we will see more of that in the future, as at least in YA books in English I feel like the past couple of years more attention is given to representation of minority groups (though disability representation is still very much lacking even there!).

    Liked by 2 people

    1. True, I think that people forget that it’s a minority and therefore forget that we also need representation. And I think that it’s actually natural for most youngsters (disabled and non-disabled) to wonder about some of these questions. So I’m glad that you were able to relate. Thank you so much, I’m glad that you enjoyed it!

      Liked by 1 person

  4. Yet again you opened my eyes (and mouth) in wonder at your resilience and beautiful honest heart. I hadn’t realised school was over! I think you’ll never have problems working or meeting people who will love you to bits. The other questions had me on my knees… My two sons, even I (as a “mature” woman) have such concerns… and the answer is that we have no idea! All things are possible to God, but He doesn’t do crystal balls for the earthly life… You have all the right attitudes though – love, living in the present, fists up to fight and a passion to change the injustices in the world… You have “The serenity to accept what cannot be changed”, (you have) “the courage to change the things that can” and He will give you “the wisdom to know the difference”. Love and blessings to you. xx

    Liked by 1 person

    1. Thank you so much for the love! ❤ You're right – we have no idea what's going to happen. I don't know for sure, but I hope that I have the things that you mentioned, and hopefully they're enough for me to be able to face whatever my future may have in store for me.

      Liked by 1 person

      1. I just read your recent blog about you bossing it and I tried to comment, but it won’t let me, so I’m taking this circuitous route to tell you – “You are beautiful indeed and you have bossed it! What an inspiration you are! Resilience indeed. I love learning about your life and how you maximise your independence. watching you do that workout made me feel very sluggish. You are right to celebrate your close, beautiful family! Now I’m sat on a chair writing for much of the day and I need to try one of those workouts. I wouldn’t dare let you see my attempt though. I love your drawings – especially the middle girl in the wheelchair as to me she looks most like you, but I love the girl listening to music on the floor. Your routine is a good idea – I think I need a routine for my working from home days, because I get lost in one thing and always procrastinate over the least favourite task. Sounds like you accomplish twice as much as me in your day. I also love languages! I did French and German at school and lived a while in Germany, then I began learning Dutch and Spanish and more recently I’ve begun to learn Greek and Hindi – I love learning the Hindi script! ” Blessings Simone.

        Liked by 1 person

      2. I’m sorry that you weren’t able to comment on that post, WordPress can sometimes be quite frustrating. But thank you for taking this circuitous route and still commenting ❤ Thank you so much for your compliments! I'm so happy that, despite my young age, I'm still already able to be an inspiration to some. My hope is that in the future I can continue to be an inspiration to even more and spread his love. Thank you, the middle design was the only one that I digitally sketched over a picture of myself which is why it looks more accurate. The other two are just inpersonations. I'm glad that you like it 🙂 Yes, I really reccommend schedules, they don't work for everyone, but they do help me to be less distracted and more focused. I'm so jealous that you lived in Germany! I really love Germany, it's one of my favourite countries. That's why I'm learning German. It's so cool that you also learnt Dutch! And being able to read the Hindi script must be amazing.

        Liked by 1 person

  5. It always hurts to see people being actively disadvantaged by others intentionally taking action which pushes them down and names life more difficult for them. I’ve been incredibly blessed in my life, so I want to start using what I have to help others. I am more no more worthy than anyone else but I am privileged to have a voice that is sometimes more easily heard than others.

    We humans need to work together and look after each other. At different times in our lives we each will need different types of support. And every one of us – every single one of us – is good at providing different support to those around us.

    Thank you so much for sharing your experiences. Your willingness to put into words what many us can’t personally know helps shine light on many things that need to change in the world. I hope you continue to feel courage to follow your path, and thank you again for your wise words. 😊

    Liked by 1 person

    1. Thank you so much, Hamish. Your words of encouragement really mean a lot. It’s always good to recognise privilege, we all are in some way. I am so happy that you want to start using what you have to help others – me too. There’s no greater privilege than being able to use your voice so that others can get heard too. Awareness is the first step against disadvantaging others. I agree – an ideal world is one where we all work together and lift each other up rather than putting each other down, because we’ll all need a boost at some point in our lives.

      Liked by 1 person

  6. What will I look like when I’m older – trust me, this is a question a lot of able bodied people I know also worry about! And you are incredibly lovable so I am sure the right person is going to fall for you someday ❤ I love how cheerful and sassy you look in your then and now photos. And well, if you ever need an au pair I feel like there may be a good one you know well… 😉 Love ya sis ❤

    Liked by 1 person

    1. I know, chances are that almost everyone has thought about at least one of these questions when they were younger. I hope that one day they will, and if I ever have children, I DEFINITLEY know how to call for a babysitter 🙂 Love you too sis ❤

      Liked by 1 person

  7. Life is full of uncertainties, so live life to the full. Don’t focus on what you can’t do, but on what you can. You already have the right attitude. Keep up the positivity and squash those worries.

    Liked by 1 person

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