I’m an adult with a disability and I experience ableism on a daily basis. It’s not always directed at me but I see it in the way others behave more often than I’d like to say. So I wanted to talk a little bit about how ableist ideas can have a negative impact on disabled children, specifically in relation to how they are brought up.
I frequently communicate with parents of blind children, especially children who do not have any additional disabilities. I genuinely want to answer any questions they may have and do my best to point them in the direction of resources and services that will be of use. However, some of the things I get asked on a regular basis concern me. Many parents aren’t aware of the technology that is available to blind people. They don’t know that we can use computers and smartphones, that we often benefit hugely from the use of technology in an educational setting. This isn’t the fault of the parents; it tells me that they aren’t being given the resources they need in order to help their child succeed. However that in itself is part of a larger issue.
If you don’t know what is available to blind people, how will you ever have high expectations of your child? If your belief is that all blind people have is braille and audio books you probably won’t be expecting your child to do the same things you would if they were sighted. And all too often my fears are realised.
I recently came across a discussion where a parent was asking how to get their child to spit out toothpaste. This is a valid question, kids are naturally messy and you want to encourage them to be able to take care of themselves. However the discussion soon took an alarming turn.
Some of the parents said they either hadn’t taught their blind children to spit out toothpaste or that they make a huge mess. Again, making a mess isn’t such a bad thing, but the parents then went on to explain that they always clean up after the children, some of whom were teenagers. A couple of blind people responded to these posts reminding the parents that the goal should always be independence. What happened if the child went to a sleepover and didn’t know how to spit out toothpaste? One of the parents even said they got their child to spit into the bath as it’s a bigger area to aim for. The really concerning thing about this is I can imagine how other children would react if they saw someone do that. It isn’t really appropriate, and blindness doesn’t negate the need to be aware of the social expectations of your situation.
After this was explained, some of the parents seemed defensive, saying it’s no issue to clean after the child. But if that child always has stuff done for them how will they ever learn to fully care for themselves? A lot of parents want to help their children, but they take it to a level where they are actually hurting them. I think this is why ableism is so hard to fight, so often it comes out of misplaced kindness. And when someone feels like they are being caring they don’t want to hear that it’s not appreciated or that they are wrong.
Parents, through the desire to protect their children often become enablers of dependence and a lack of skills. I don’t blame them for this, but it sometimes upsets me when I see competent blind adults warning them of this and they dismiss it. I don’t get upset because they ignore my advice, but because I’ve seen children who have grown into adults who aren’t aware of how to take care of themselves. The damage is real, and I hope people will see it and work to avoid it.
Something else I notice is when a parent is given advice, usually about teaching their child age appropriate skills, they become quite angry. I can’t count the amount of times I’ve had people tell me I’m mean, or that we should love our children for being unique. Of course we should love our children; I would love to work with kids. But there’s a difference between loving a child for the uniqueness we all possess and using it as an excuse to shelter a disabled child. Sometimes, they are saying a very low skillset is what makes their child unique, as if that justifies it. But it doesn’t, and never will make up for the long-term damage that can be done.
By sheltering a child you don’t teach them the advocacy skills they need to be successful as an adult. It’s ok to have limitations because of a disability, but you have to know how to manage those. I can’t drive or read print so I must be aware of alternatives that are available to me. I need to know how to organise to get to class on time, and once I’m there I have to be able to explain what my needs are and how I can best be supported. If you always do things for a child they won’t be able to do that once they reach adulthood.
There’s a difference between not being able to do something because it is a practical limitation of your disability, and not having the skills to do it. Most of all blind children can’t do things because they’ve never been allowed to do it, because their parents have an idea of what blind people are capable of and they won’t change it.
Celebrate your child for who they are, but remember that they have to step out into the real world. If they don’t know how to behave in social situations and can’t take care of themselves they will never live the life they could have. A rule I like to tell parents who are new to the blind thing is that if you wouldn’t make excuses for your sighted child doing that, don’t for your blind one.
Ableism tells us that disabled people are inspirational for completing daily tasks, that every single achievement is amazing. Ableism is wrong. We are, and should be seen as, the same as every other person. Set high expectations for your blind child; push them to learn the skills that will carry them forward once they leave home. Teach them to be responsible, articulate people who understand their limitations and can clearly convey what they do and don’t need. If you take away your preconceived ideas about what it means to be blind and reach out to people who recognise that your child has the same amount of potential as anyone else then you’ll soon see how wrong the public perception of disability is.
I will fight this every day. I will fight it because it impacts me and every other person who is working to build a life for ourselves. Negative perceptions of disabilities hurt my employment prospects, they affect the level of support an educational institution is willing to extend to a blind person. They hurt me because people tell me I’m an inspiration for studying, as if it’s not what a blind person should be doing. They ask me if I want to be cured, because my life must be awful. And they do it to all of us. Do you know what it’s like to be applauded for doing something an abled person is expected to do? I don’t want people to sing my praises, or those of other disabled people, because we have lives. I want people to find us as boring as they do everyone else. We don’t exist to be paraded, or be the new feature of a sob story. We are human.
Our parents have a huge influence on the people we grow up to be. I hope if you have a disabled child, whether they are blind or not you’ll read this and take it for what it is. It’s not an attack on your parenting skills. I have never doubted for one moment that these parents love their children. But sometimes kindness can stifle a child and I want parents to know that they are doing the right thing by taking a path that may seem difficult. It’s so easy to believe everything we are told about disabled people, it’s engrained in us but we can change our minds. I didn’t always think like I do and I know many others who are in the same position as me. It’s ok to admit that the preconceptions you had were wrong, there is no shame in changing your attitude.