4 Things Parents of Disabled Children Should Know

Posted in My Nugget of Wisdom for the Week

Hey, guys! Welcome back to The Wheelchair Teen (even though I’m technically not a teenager anymore 😊). My parents are nondisabled, as are most Disabled people’s. Nondisabled parents who have Disabled children (who I call aNDy parents) are often viewed as fierce warriors who are constantly fighting for their child to be able to have a chance on this earth. And rightly so, I know some aNDy parents who have gone to the ends of the earth and back for their kids and would eagerly do so again.

Me and my mother holding each other and smiling as we both lie down in a bouncy castle and face the camera
A picture of me and my mother

You see, when you are constantly dealing with people who assume your child’s life is worthless just because they were born Disabled as well as constant ableism from schools, doctors, and fellow parents – life can become a sort of battle that aNDy parents are continuously waging. However, while in the midst of this fight, there are some things that I think are easy to neglect. Some things which I wish my parents and other aNDy parents would teach their children.

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4 Main Things Parents of Disabled Children Should Be Aware of

1. Disability with a capital ‘D’

Plain logo of a person in a wheelchair in an action pose but the logo has been filled with the colourful stripes of the Disability Pride flag.
A wheelchair logo filled with the Disability Pride flag

It’s important for aNDy parents to realise that their child is Disabled with a capital ‘D’ as well as disabled with a lowercase one. Disability is a part of identity as well as a medical state. This means that your child belongs to a minority that you don’t. Even though you’re different from your child in this way, it’s still essential that you make sure they learn about their people’s culture, heritage, and history. It’s a little the same as being parents who adopt a child from a different ethnicity. You need to educate that child in their own culture and make them aware that it’s different from yours.

A model with a prosthetic arm and blue hair has one eye closed and is covering the other with a white flower.
Model with a prosthetic arm holding a flower over her face by Anna Shvets via Pexels.com

Disability culture is so rich and beautiful and its roots are planted deep within the history of the earth. Don’t let your child grow up inside a vacuum, help them find their community and validation through knowing other people like them. Help them to learn the history of the Disabled rights movement, the history of the incredible people who fought for their rights in previous generations so that they could live the life they do now, and the history of the amazing Disabled artists, activists, and scientists who have existed throughout time. Also teach them about Disability culture specific to where they’re from. Maybe introduce them to queer Disabled artists/activists of colour if they’re from multiple minorities like I am. Make sure every part of their identity is reflected back to them.

A long line of people in wheelchairs stand on top of a hill holding signs. One of them is waving an American flag but the stars are arranged to form a wheelchair. The picture is in black-and-white.
Photo of Disability rights activists in 1990, featured by Next Avenue via PBS Independent Lens

Growing up, I never even knew Disability culture and history existed. I never knew it was something to be proud of and something worth fighting for. I was told by my doctors that I had a ‘disease’ and my body was wrong and that was it. Heritage is a part of identity and identity is a part of loving and accepting oneself so that you can take pride in who you are. I think it’s just as important as fighting for your child’s right to public education or care.

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2. There are some things you may never understand

No matter what you do to protect your child from it – they will experience ableism. You may never know how it feels to face ableism yourself. It doesn’t appear in the same form as other types of discrimination but it is just as horrifying. Until you experience constantly being treated as less than human by everyone around you, constantly being stared at and objectified, and constantly feeling the pressures of living in a world that acts like you’d be better off dead – you’ll probably never realise just how horrifying it feels.

Me when I'm younger standing up, crossing my arms, and smiling in my garden.
A photo of me when I was younger

But you don’t need to understand the feeling to help your child get through it. Never tell your child to just ‘deal with it’ or ‘get over it’. That’s not what you say to victims of racism or sexism. Crying at being stared at may seem like something small, but I know from experience how colossally difficult it can be to deal with. Get your child to tell you their feelings and just listen to them. Don’t feel the need to tell them that you know exactly what it is that they’re going through. Make sure your child has Disabled friends they can discuss things like this with too. But most of all – just be there for them. Knowing that you’re not alone when you face ableism can make a world of difference.

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3. Your own internalised ableism

If you are an aNDy parent and you discover that you are going to have a Disabled child, I encourage you to do as much research as possible on the Disability community so that you can get rid of your internalised ableism. Most people hold ableist ideas in their head without knowing it, even most Disabled people. Why? Because a lot of us have been raised by aNDy parents who have passed down ableist views to us. I’ve seen too many Disabled children say things like: “I don’t call myself Disabled because my parents say I’m normal like everyone else.” This deeply saddens me because it sends the message to your child that being different is bad.

A woman in a wheelchair is waving a sparkler in a beautiful white dress. She is smiling and looks beautiful.
Woman in wheelchair smiling with a sparkler, Pexels.com

Your child is Disabled (and no, ‘Disabled’ doesn’t mean ‘not able’, nor does it need to be replaced with patronising terms that make nondisabled people feel more comfortable). They are different and it’s important that they know that it’s okay for them to be. Your child is perfect just the way that they are. They should never be told to hide their drooling, stimming, or limping. Disabilities are not things to be cured, they are (and I know that I say this a lot) a natural and fundamental part of human diversity. After all those years with physical therapists, doctors, and accessibility talks with my teachers – not once was I ever told that it was okay for my body to be the way that it was. That there was nothing incorrect about it. That I was just different and being different can be magical.

This picture is five pictures of me all put together. I'm holding a different Disability children's book in each one but still wearing the same clothes and sitting in the same spot in my room.
Pictures of me holding Disability children’s books

Don’t only avoid internalised ableism yourself, also help your child to avoid it. Take them to Disability pride parades and celebrate Disability History Month, the International Day of Persons with Disabilities, and the Disability Day of Mourning with them. Read them picture books with strong intersectional Disabled representation. And when they’re a little older, buy them middle grade and young adult books with representation. Actively seek out Disabled content creators to follow together. Encourage them to watch TV shows and films with positive Disabled representation. I can only dream of a childhood where I felt so valued and seen as one that includes all of the above. I probably never would’ve learned to feel ashamed of myself in the first place.

This picture is 16 different Disability children's books spread out across the floor in my room. My hand is in the corner holding one of them.
Just some of the Disability children’s books I got to read after helping to diversify a primary school’s library collection. In total, there were many more including the ones I’m holding in the pictures above.

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4. You don’t speak for your child’s community

A Black girl in a wheelchair looks defiantly down at the camera in this picture. There is a plain grey background behind her.
Photo of a girl in a wheelchair looking defiant by cottonbro studio via Pexels.com

One thing that I’ve noticed happening more and more is aNDy parents speaking for their children and the communities their kids belong to. No voice should replace Disabled people themselves when it comes to telling our stories. Not our parent’s voices, not our carer’s voices, and not our sibling’s voices. Writing about the Disabled experience even though you’re not Disabled is completely fine, but stories about Disability told by Disabled people themselves should always come first when it comes to learning about our experiences. aNDy parents need to realise that they might fight and care for us, but they are not part of our community and cannot speak for us.

I don’t mean parents speaking for their children who can’t communicate with the world in the traditional nondisabled way. I mean parents trying to change things about Disability culture as they see fit. Like doing interviews about the Disabled experience in place of a Disabled person. Or trying to eradicate the word ‘Disabled’ because they’re not educated enough about what it means to the community.

A selfie of me and my mother both smiling at the camera.
A picture of me when I was 16 with my mother

My mother used to think ‘physically-challenged’ was the least offensive term to use when referring to Disabilities (which she’d learnt from a different aNDy mother who expressed that opinion online) so I did the same because I was young and didn’t know any better. I’ll never forget the incredibly healthy discussion we had when I was sixteen where I introduced her to the fact that people in my community prefer the term ‘Disabled’. The word may not fit the nondisabled expectations people have for us to conform or be ashamed, but once you understand Disability culture and our roots, you realise that there is so much power behind the term ‘Disabled’.

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I hope that this was useful. I want to one day adopt a Disabled child because I know that there’s a real need for it. And I hope one day to raise them following these suggestions and to pass down the love for the Disabled community that I’ve found in myself. To all the aNDy parents out there, we salute all the amazing work you do. I especially want to shout out my own mother for making me into the warrior I am today. Thanks so much for reading ❤ What other things do you think are essential when raising a child that belongs to a minority that you don’t? Feel free to comment below! See you next week!

Published by The Wheelchair Teen

I am a black, disabled teenager and my blog shares my personal experiences, some of the struggles and triumphs I’ve been through, as well as posts that educate people about disabilities to help end discrimination against disabled people.

68 thoughts on “4 Things Parents of Disabled Children Should Know”

    1. I’m so happy that you were able to find this post helpful! 😊 Oh yes, I forgot that you wanted to adopt a Disabled child in the future too. I hope these tips will be able to guide you when you do. You’re welcome, thank you so much for reading! 🥰

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      1. You are welcome! Yeah, there’s a lot out there about transracial adoption, which honestly, there’s a lot of similarity between that and what you’re sharing, but really not as much about aNDy parents of children with Disabilities, so this was really helpful! If you ever have any more tips, I’m all ears!:) Thanks again for sharing.

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    1. Thank you! I’m not too sure, I don’t really know if these posts reach the ears of the people they need to. It’s always up here for if anyone ever needs it though. I’m glad you enjoyed the pictures anyway 🥰 Enjoy your weekend too! ❤️

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  6. That is such a beautiful picture of you and your mom. You both look so happy. It made me smile.

    You make such good points. These things are definitely important to know.

    I’ve noticed that when I’m in my wheelchair, people often don’t make eye contact with me. They tend to speak with the person who is with me like my sister or the Mister. I want to tell them, I’m a person, I’m here, and you can speak to me directly.

    I’ve also experienced situations where people think they can move me. There was once a lady who thought she was being nice and thoughtful because she thought I couldn’t see the fireworks where I was sitting in my wheelchair. Without asking me, she said, “Oh, you should sit over here where you can see.” And she actually wheeled me to a different spot and left me there. I was no longer near anyone I knew, and it made me nervous. Just because I’m in a wheelchair doesn’t mean you can just move me. I think people learning wheelchair etiquette is important.

    Anyway, I think your article is very useful and I’m glad I read it. I hope you’re having a terrific weekend! 🤍🌻🌺

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    1. Thank you so much. I’m happy that it made you smile 😊 I experience the same. People for some reason assume that I can’t speak for myself just because I’m a wheelchair-user. It makes no sense at all. No one should assume that you don’t have a voice or that your words don’t matter, no matter what you look like or what your Disability is.

      I’ve been moved too and it’s always frustrating. Like, how hard is it to just ask first? I wrote about things like this when I first started my blog with posts like ‘The do’s and don’ts of talking to someone in a wheelchair’ and ‘things disabled people always hear’. My blog subjects tend to learn and grow along with me and I’ve been really into finding ways to strengthen the sense of community within Disabled people recently. I’m glad you found this useful. Have a terrific weekend too! 🥰

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      1. Yes, exactly. I couldn’t agree more.

        Ooooh, I will have to go back and read some of your older posts, and share them, too.

        I’m so glad we found each other. Your posts are wonderful. xo

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    1. Yes, it 100% would. I encourage you to share this with them. Some of the Disability picture books were about autism. Tell your friend that if they ever need any positive autism books or films for their children, I have a lot of recommendations 👍🏾

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  9. I had a friend who was blind, who wrote an interesting children’s book. I thought the title was “The Cane,” but I’m not finding it online… Anyway, it was the story of a white cane that moved down the sidewalk through a town, and it was later revealed that there was a blind person walking with it. The point was that the blind person felt “invisible,” people only saw the cane. It was a sweet story. Maybe I can contact the author and get more details.

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    1. I think I’ve actually heard about that book before! I remember thinking that it was such a creative idea for a book. I think maybe you might’ve told me about it before or maybe I’ve come across it during my extensive research on Disability children’s books. It’s really cool that you know the author! Let me know if you ever get those details about the book.

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    1. Thank you, I’m happy you appreciate it so much. I would love a column like that! I’d really love the opportunity to spread awareness on a larger scale. Maybe one day once things start settling down over here I can start looking into bigger and better things. Thanks for the idea. I hope you have a lovely Sunday! ❤️🌼❤️

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  13. Great advice. I think this approach can be applied to folks like me, who survives despite having cancer. My family loves me, and I know they do. However, they often don’t have a clue of what I’m experiencing. I’ve learned to take the good stuff and discard all that’s useless.

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    1. Thank you, I’m glad you enjoyed it. Yes, it definitely can be applied to you as well. I see what you mean. Sometimes it can be difficult when those around us mean well but don’t really know what it feels like. I think what you’ve learnt is a good way of dealing with it.

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  14. Informative. I think a big part of life for any youngster is discovering how they can carve their niche in the world. With a disability it must add another dimension.
    I must admit I’ve never really looked into the history of disability. I guess I’m lucky because I’m able to do many of the things I always used to. Sometimes I need tweaks etc. but I get there. Usually, anyway. So I just get on with life – being disabled is not dominant for me.

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      1. I guess… because I had quite a full life before… and a lot of stuff, I can still do, or have relearned. Some big things, I can’t do, like driving, but it is what it is; there’s no point dwelling on it.

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  15. This is a really well-thought-out essay. It’s highly informative and makes its points clearly and succinctly. Such as this: “Don’t let your child grow up inside a vacuum, help them find their community and validation through knowing other people like them.”

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  17. Simone, you are blessed with great wisdom! This brings awareness and understanding of how the Disabled truly feel and how he/she should be treated. The photos with your mom are so lovely! You have such a strong support from her. ❤️

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    1. Thank you, I’m happy you think so. I hope it does, I’m not too sure many people care that much though. I don’t really know if these posts reach the ears of the people they need to. It’s always up here for if anyone ever needs it though. I’m glad you enjoyed the pictures anyway 🥰

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  18. WOW Simone, I am speechless as I had to allow your very thorough and very informative heartfelt message soak in. Your words and experiences shed great light on how the non-disabled community looks at and treats those with disabilities. The photo of you and your mother is so emotionally precious. 🤗🙏🏼🥰

    I never thought about your point in #4 – You don’t speak for your child’s community, because I see evidence of this all the time. Yet, when I hear disabled children speak about their condition, for example, I tend to listen more intently. Thank you for continuing to teach us “how” and “why.” Your voice is so passionate and more powerful than you realize. Peace and blessings. 😊💖😍

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    1. I’m glad you were able to take away so much from this post. It’s my goal to educate and shatter perceptions which is why raising awareness is so important to me. Thanks, I really like these pictures too 🥰 Yes, it’s true that there are many examples of aNDy parents speaking for their child. It’s a shame because by stepping back and allowing their child to take the floor, that’s when you really see them shine. Peace and blessings to you too ❤️❤️❤️

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  19. Excellent points made, Simone – #1 was an eye-opener for me. The idea of disability being a culture provides practical ways of understanding and interacting for someone outside that culture, like myself. Also, it implies a shared ‘heritage’ added to one’s family heritage/culture. Very thought provoking and filled with ‘action’ type suggestions.

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    1. I’m glad you were able to take something so valuable away from reading this post. Exactly, the idea of Disability culture often makes nondisabled people uncomfortable because it insinuates that we accept and celebrate the parts of us that are different rather than being ashamed of who we are. Thank you so much for this positive comment. It’s always nice to know that my message is hitting home. 😊

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  22. I love the two photos of you and your mom! You always give me such food for thought. I’ll have to check out those picture books – my favourite age-range; but do you recommend any books for 7 – 11 year olds?

    ‘They are different and it’s important that they know that it’s okay for them to be. Your child is perfect just the way that they are. ‘ – that was important for me to take away. Thank you, Simone. x

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    1. I’m glad you liked them! 😊 Quite a lot of the books in the pictures are for 7-11 year olds. My main recs are:
      Ade’s Amazing Ade-ventures: Battle of the Cyborg Cat by Ade Adepitan
      Aven Green Sleuthing Machine by Dusti Bowling
      Proud to be Deaf: Discover my Community and my Language by Ava, Lilli, and Nick Beese
      A Walk in the Words by Hudson Talbott
      Roll With It by Jamie Sumner
      The Christmasaurus by Tom Fletcher, illustrated by Shane Devries
      The Night The Moon Went Out by Samantha Baines, illustrated by Lucy Rogers
      Those were my favourite children’s books for that age range 🥰

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  23. What a great post Simone! You brought to light the importance of how to support, navigate and grow when love, acceptance and honesty is fostered. Love your pictures of you young and with your mom.

    Recently
    my dad who as you might remember can barely see said to a man I can’t see to get my mail. The man said “at least you aren’t in a wheelchair” and he got his mail. It was a touching moment of support and care.
    Loved this Simone!💕

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    1. Thank you! 🥰 Love and acceptance are vital to every person’s health while growing up. It feels great to be able to shed light on the Disability aspect of these things. I’m glad you enjoyed the pictures of me and my mum 🥰 She’s such a great support in my life.

      I’m very happy that that kind neighbour helped your father. However, sayings like ‘at least you’re not in a wheelchair’ can sometimes be a little hurtful. It puts other Disabled people down and makes it seem like it would mean that you would be living a worse life if you were in a body like mine. I am in a wheelchair and I’m doing great! People shouldn’t be reassuring others by telling them that at least they’re not like me. Then again, I know that neighbour didn’t mean any harm by it and was just trying to be nice. I just think that in general we should all be more aware of the negative ways we discuss Disability using our every day language.

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      1. You’re so welcome Simone! It really is and you do an amazing job!
        I think people don’t know what to say at times and I hear you! The man recently lost his limbs out of no where an I think he was trying to make my dad feel better about his vision. More importantly, I loved the connection of care and love they exchanged by helping each other. Your points are so well taken, thank you so much💕

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  25. Bonjour

    Je vous écris ce petit texte pour vous dire au revoir

    Par un message poétique

    A toutes les personnes qui m’ont suivi jusqu’à maintenant

    Que ce soit par les liens du net, par messages, sms, un face à face, une rencontre

    A tous ceux qui ont suivi mon blog

    En me laissant une marque de leur passage

    Je tiens à vous dire

    Qu’avec vous j’ai vécu une belle histoire d’amitié

    Je vous en suis plus que reconnaissant

    Mais j’ai décidé de m’arrêter là

    Comme une poésie qui s’éteint

    Merci pour ces moments magiques, particuliers

    Une page se ferme

    Comme une histoire d’amour

    Ainsi vas la vie

    Gardez l’espoir, bonne continuation à vous tous

    Par ces derniers mots

    Joyeuses fêtes de fin d’année

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    1. Oh, I’m sad to see you go but I wish you all the best anyway. It was lovely meeting you. I hope that you’re having an amazing 2024 and that you will continue to have many more incredible years 🥰

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  26. We are always in a position to continue learning and each day we have the opportunity to show that to ourselves and others. Thank you for continuing to help non-disabled people, like myself, to listen better, to seek to have useful conversations – to be better humans basically.

    I hope you and your family are well this week, and that your advent season is one filled with joy and hope.

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