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Disabled children usually will not have a lot of questions about their disability when they are young, but if your child has any kind of awareness, eventually, they get to an age where they wonder why they are different from everyone else. The hardest job that parents of disabled children have that non-disabled parents will never have to worry about is telling their child that they will not get better and will live with their disability their entire life, unless there is a cure, which is not an option for a vast majority of disabled people. When you tell a disabled child that they will never get better, it can be scary because we live in a world that is designed for non-disabled people and is surrounded by ableism. Disability acceptance is difficult for both families and disabled people because there are a lot of incorrect and harmful disability messages in the media. A parent’s worst nightmare is having to tell their child that they will never get better because disability is often seen as bad, and some kids may see it as a negative, but you can’t always keep disability from your child. How do you tell a child that they are not getting better? In this post, I am going to talk about what I would do if I had to tell my disabled children that they are not getting better.
Do not lie– Most disabilities and chronic illnesses have no cure, and the biggest and most harmful mistake you could make as a parent is telling your child with an incurable disability that their disability will go away. When your child is young, you might be able to get away with lying, but that is not going to work forever, and eventually, they will figure out that they aren’t getting better. When you lie about how Santa Claus is real, it’s very different than lying about a disability because lying about Santa Claus will not cause permanent damage, but trying to hide your child’s disability will. You are not protecting your kids by trying to keep their disability from them because disabled people have the right to know, and we need to have these hard conversations to help disabled people get to a place of acceptance. It is hard to tell your child that they will not get better, but lying to your child doesn’t change their disability because if you don’t tell them, someone else will, and in my experience, hearing it from a total stranger is worse. It took me a long time to truly accept my disability, but I am glad my parents never lied to me about it because I think it would have caused me to not trust my family and made me more upset. Lying about your child’s disability teaches your child that they should be ashamed of their disability and will cause more harm than if you were honest.
Connect them with another disabled person- If your child is struggling to accept their disability and you are having a hard time helping them see the positives of their disability, it might be a good idea to connect them with another disabled person. Ideally, you would want to connect your child with another disabled person who has the same disability as them and can relate to it, but not everyone knows a lot of people with the same disability as they do who have accepted their disability. If you don’t know a disabled person with your child’s disability, that is okay, because talking to anyone with a disability can be helpful, even if it’s not the same disability as them. Disabled people can connect with other disabled people in ways non-disabled people can’t, even if we don’t have the exact same disability. I may not understand the social challenges that people with autism face, but I do understand challenges and can provide advice that a non-disabled person wouldn’t be able to. You don’t need to have someone’s disability to be able to connect with them because all disabled people can relate to challenges. Disabled people can connect with their peers in a different way than non-disabled people because we can say that we understand life is hard and truly mean it. Non-disabled people can say that they understand life is hard, but disabled people will usually roll their eyes because we know you don’t understand, and it doesn’t hold as much weight as if it were coming from a disabled person.
Use inclusive language- When talking to your children about disability, your language matters because if you use ableist terms, it can have a negative impact on disabled people. The language you use will be different for each parent, and it depends on what disability you have, because the language you use to explain Spina Bifida is going to be different than what you would say to someone with autism. Parents who are trying to explain to their children that they are not getting better can benefit from learning inclusive language because terms like wheelchair-bound are ableist and can have a negative impact on their child. I would avoid using terms like “normal” to identify a non-disabled person because it implies that disabled people aren’t normal and can be harmful to say to a child who doesn’t understand why they are different. As your child gets older and develops their own opinions, the language they choose to use to identify their disability may be different than what they were taught, but every child has the right to know what inclusive language is, and parents should be doing their best to teach their children inclusive language.
Remind them that it’s okay to be different –Disabled people are often told that we are weird and stupid, and I can’t stress enough how important it is that we teach our children that disability makes them different, not “retarded.” It is scary to be disabled in the world we live in, and it’s more important now than ever that parents teach their disabled children that it’s okay to be different because disabled kids are more likely to be bullied than non-disabled children and will probably run into someone who makes them feel shame for their disability. It is hard to send your disabled child to school because disabled kids are more likely to be bullied, and you can’t completely shield someone from ableism, but you can teach them how to recognize and deal with it. Some progress has been made for better disability inclusion, but ableism is still a problem, and it’s more important now than ever that parents teach their kids correct disability messages to make it easier for them to cope when someone is discriminating against their disability.
When you have a disabled child, it is hard to tell them that they are not getting better, but it is so important that you do because lying about your child’s disability will only cause more damage. Some disabled people will never ask what is wrong with them, but most people do, and it’s the job of the parents to make sure they explain it in a way that is reassuring and positive. If your child starts asking questions about their disability, please do not try to avoid the question because every child has the right to know and will still be curious even if you try to hide their disability and pretend it’s not real. It is hard to tell your child that they are not getting better, but it will be easier when you’re honest because kids shouldn’t learn that they are not getting better from a bully at school. The first time you tell your child that they will not get better, it’s going to be hard, and some people may struggle with accepting it, and that is okay because we all go through that, but the sooner you talk about it, the easier it will be. Disabled people need their parents to be honest because if you don’t tell them, someone else will, and, in my experience, when you have to learn things from other people, they aren’t always nice about it. How do you tell your disabled children they are not getting better? If you liked this post, please leave a comment below and share it with your friends.
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