Families with disabled children know a lot about their child’s disability, but knowing a disabled person does not make you an expert, and the only true disability experts are disabled people. Parents of disabled children do their best to teach their kids the right values, but sometimes families are ableist and do things that disabled people wish they wouldn’t. Families of disabled children can learn so much about a disability from their disabled loved ones because doctors do not know everything, and you will still never fully understand a disability you have never experienced, and that is okay. Friends and family often want to do as much as they can to make their loved one’s life easier, but sometimes people don’t know how to support disabled people and do things that they think are helpful but aren’t. I hold my family at a slightly higher standard than total strangers, but I don’t expect them to be perfect because even disabled people don’t know everything and are learning from peers. I think that it is important to educate non-disabled family members because, although we can’t force them to listen, we can give them the tools to do better. What do disabled people want their families to know about disability? In this post, I am sharing a few things that families need to know about disability.
Doing something for me is not helpful- When I am doing a task and struggling, sometimes non-disabled people think that I can’t do that task and will do it for me without asking. There are some tasks that I will require assistance with, but before you do something for me, please ask if I need assistance, because when you don’t allow me to do something independently, you are taking away the little independence I do have. I will ask for help if I need it, and if I am not asking for your help, it probably means I don’t need assistance with that task, and to let me do it myself. There is nothing more frustrating than when people force help because it’s not helpful, and I get very annoyed when people do that. Ask disabled people if they need help before doing the task for them, and if they say no, respect their answer and leave them alone. I struggle with most tasks, but even though something is harder, that doesn’t mean I can’t do it.
Don’t use accessible parking spaces if I am not with you- My family does not use accessible parking spaces when I am not with them, to my knowledge. If a family or friend did use accessible parking spaces when I wasn’t with them, I would be upset by it because accessible parking is not there to convenience non-disabled people, and you should only use it if a disabled person is in the vehicle. You should never use accessible parking if a disabled person is not with you, even if it’s only for five minutes, because not only could you potentially have to pay a fine, but you could also be the reason a disabled person doesn’t get a close spot. If there is anyone who should not abuse accessible parking, it should be family and friends, because you should know better than that, and I feel violated when people use my disability to their benefit.
I want you to use terms I prefer– There are a lot of terms that you can use to identify a disability, but not all disabled people will use the same language when identifying their disability, and some people will call themselves handicapped or special needs, while others can’t stand these words. Language such as special needs and handicapped or so normalized, but it’s ableist and I don’t refer to myself in that way and wish friends and family wouldn’t either. I don’t expect my friends and family to be perfect because it’s not as easy for non-disabled people to recognize ableism as it is for disabled people. If there is one thing that disabled people want their friends and family to know, it’s that we want you to use terms that we prefer to use not ones that make you most comfortable. It is okay to use the word disabled because it’s not a bad word, and a lot of disabled people want you to use it. I know it’s not as automatic for non-disabled people to take the words special needs out of their vocabulary because it’s such a normalized term, but if your disabled loved one doesn’t want to be called that, you should do your best not to. Disabled people are always learning how to navigate ableism because it negatively affects us, and you can support your disabled loved one by not use ableist language.
Knowing a disabled person doesn’t make you an expert- Friends and family who have disabled loved ones sometimes think that because they know a disabled person, they know everything. You may know a lot about my disability if you knew me, but you are not an expert unless you are disabled, because it doesn’t matter how many articles you read about my disability, there are some things that you would need to have my disability to fully understand. Knowing a disabled person doesn’t make you an expert, and you can also learn more about a disability from your disabled loved ones, because we can teach you more than you think. You may think that you are an expert because you know a disabled person, but I promise you, you’re not.
It is okay if you don’t know everything about my disability- Family members will know a lot about their loved one’s disability because you have to in order to be able to help them, but you are not going to know everything, and that is okay. If you are not my caregiver, you may not know how I go to the bathroom unless I happen to tell you, which I usually don’t, and that is okay because sometimes you don’t need to know. Family members are not entitled to know everything about my disability, and sometimes you have to be okay with being in the dark about some things because some health issues are uncomfortable for me to talk about with others, so I don’t. You are not entitled to a disabled person’s medical history even if you are family, because sometimes health issues are personal, and we aren’t comfortable talking about them. Disabled people shouldn’t be forced to talk about their personal health issues just because you are curious, but often, we are in a situation where we are. You shouldn’t be telling people about my personal health problems with others, and you should be asking disabled people if you really want to know, because it should be up to the disabled person to share that information, and it feels violating when you ask other people questions you know I won’t answer.
It hurts when you say accessibility is inconvenient– I expect strangers to say that accessibility is inconvenient and expensive, but when I hear family and friends make comments like that, it hurts. Accessibility matters to disabled people, and when you justify inaccessibility and say that it is okay, it tells me that you don’t care if my life is harder than it has to be. If there is one thing that disabled people want their friends and family to know, it’s that accessibility benefits everyone, and you should never tell a business that their lack of accessibility is okay because it hurts the disabled community. It is not a badge of honor to be accessible because, at the bare minimum, you should be following ADA standards, but it’s also not okay to ignore accessibility. I get so frustrated when people say that accessibility is not convenient and expensive because accessibility is not as expensive as you think, and sometimes all you need to do is get a ramp for your business so disabled people can access it.
Anyone can become disabled- Non-disabled people sometimes think that there isn’t a lot of disabled people in the world, and it is true that there are more non-disabled people than disabled people, but even though you don’t know a disabled person, that doesn’t mean there aren’t a lot of us. There are more disabled people than you think, and one in four people (over 70 million people) will have a disability, and even though you aren’t currently disabled, that doesn’t mean you never will be. Disability can happen to anyone, and all it takes is an accident, age, or illness to instantly become disabled. Stop telling disabled people that you don’t have to care about disability awareness until you are disabled, because one day it could be you who has access needs.
Some challenges are difficult to see– If there is one place that you should not be judged, it’s within your own family, but sometimes families struggle to accept a disability, and disabled people lack a support system, which is why a lot of people get online. I am fortunate that I have a visible disability, and I have never had an issue with a family member telling me that what I am experiencing is anxiety and not real, but not everyone has a great system. Disabled people with invisible disabilities sometimes feel like they have to prove their challenges to their friends and family because they are not visible, and you are not always believed. It is hard for a disabled person to accept a disability, but it is even harder when people you love are constantly shaming you because everyone wants to be accepted. Disabled people get gaslit enough at doctor appointments, and we shouldn’t experience that within our own family. You should believe pain that you cannot see because disabled people shouldn’t have to prove their disability to loved ones.
Family members can learn a lot from their disabled loved ones, but sometimes people think they don’t need to learn from us because they know a disabled person. When you do things for me that I asked you not to do, or say something ableist that I have told you negatively affects me, it tells me you are not an expert. I don’t expect family members to get it right all the time, and people make mistakes, but you should be trying just as hard to not be ableist as disabled people to support your disabled loved ones, because it’s important to disabled people. Listen to disabled people and put what you learn into practice because there is nothing that brings me more joy than when I see people trying to be inclusive. I don’t always call close friends out when they say something ableist because I know most of the time people mean well, and it would be exhausting to call people out every time they referred to me as special needs, but that doesn’t mean I am not bothered by it. What do you want your family to know about your disability? If you liked this post, please leave a comment below and share it with your friends.
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