I had never heard the word abelism before 2014. Even after my daughter was diagnosed over 10 years ago I was not aware of it. When I first saw it used, I actually had to look it up;
ableism is the discrimination in favor of able-bodied people.
It was not something I concerned myself with too much as I consider myself to be a pretty good person who doesn’t discriminate against anyone. I certainly never thought it would apply to my daughter. Then I read an article talking about the vaccine-causes-autism issue.
This issue is in the forefront of news again, due to the recent outbreak of measles across the country. The article pointed out that most, if not all, of these articles were ableist because they talk about whether vaccines cause autism or not, as if autism is a disease.
This concept never even occurred to me until I read this article. I can think of several times where I have left comments or written articles that used much the same language. For this I am sorry and can only hope that I have not offended anyone.
More importantly the article got me thinking about how the use of language and social media can be so powerful. I don’t think most people really consider how the words they use can be interpreted in different ways, but in today’s web connected world, words are even more important. You don’t know who will read what you have written and more than likely you won’t ever have a chance to explain a word that someone else may find offensive.
It is also important to remember that once you post something, it is out there forever. So all those families, friends and parents who post about the trials and triumphs of their children, it is important to stop and wonder how those same children will feel when they read it themselves. It doesn’t matter how old they are now – eventually they will see what is written. Will it make them happy it was posted or embarrassed and angry?
It doesn’t matter if the post is well intentioned or not. Posting on Facebook asking the public to send birthday greetings may seem like a nice thing to do, but I often wonder if those parents have asked that child permission before they post. Does the child really want the world to know they don’t have any friends? Do they really want greetings from people who send them only because they feel sorry for them and will never hear from again? Do they even care about getting birthday greetings? or is the parent assuming a feeling the child doesn’t actually have?
It seems that as parents we tend to make a lot of assumptions, myself included, about how our children feel or think – without asking them. Our priorities are not always theirs and it is time to step back and take an honest look at how we behave online.
As a freelance writer I tend to share a lot of stories about our experience with autism and raising an autistic daughter. I never really asked her if it was okay to share these stories and just assumed she wouldn’t care because I keep her anonymous. However I am making a commitment that from now on I will check with her first, before sharing anything online that refers to her or her experience.
I am going to work hard to remember that everyone deserves respect. If I post something that I would find embarrassing if it were about me then I just shouldn’t post it.
I think understanding that ableism doesn’t just apply to ‘other‘ people, but to everyone is an important step in autism awareness. I only hope that other parents will take note and start to think more about what they post.
I like the clarification point between respecting your child as an individual with needs that may be affected by what a parent or other people may or may not publish online. I guess I would like to see further clarification for Abelism as not just the act of communication in publishing, as an oversensitive parent it is a point of tenderness for me in my own life facing teachers, grandparents, blah blah..whoever. I would actually include language or idioms that help or hurt a person’s self esteem or psyche…as “autistics”, or our tend to focus on disability and “deficits”, “PDD-NOS” to me is a death sentence as far as your own teachers perception of your ability in a school, maybe I am oversensitive. To me when a general ed teacher is speaking with me about “normal” kids in comparison it grates like fingernails on a chalkboard in the background and stokes my special needs parental anxiety fearing for his safety in the presence of people who have different values. Values where it includes family ideas passed as judgement of what “normal” should or should not be, because the emotional health and wellness of my child is a priority value for me and my family.
This is a very well thought out piece. I think a lot of people don’t really consider the privacy or dignity of their children before they share about their journey on the internet. We need to be very careful how we present them to the world, and also how they would feel if they read our words.
You have a fascinating and well thought out article about social media, although I’m not sure what it has to do with “ableism.” Abelism itself is a concept with which I have difficulty, a made up construct. I don’t believe the problem is discrimination in favor of able-bodied people but, rather, against people with a disability or a perceived disability.
I also wonder about this recent movement toward autism not being characterized as a disease…, or a disability, a handicap, an illness, a condition? If not that, then what exactly is it? I have raised 4 children, all at different places on the autism spectrum from severe autism to ADD/PDD to Aspergers/high functioning autism. In each case, my children were able to benefit from the additional services and supports they received because of the classification of their respective condition as a disability (or a disease or something else). I cannot imagine what would have become of them or of our family if my children, now all adults, were treated exactly the same as everyone else, exactly the same as their neuro-typical peers. I expect at least one of them might be in jail or dead, certainly each of them would have been bullied, beat up or humiliated, and none of them would have gotten the extra help and extra time they needed to learn in a way most appropriate to them.
So, yes, autism is in fact a disease. Autism is a neurological disorder that requires special care and handling as your child grows and develops. For all of us who say we would change our children if we could: Bravo! We love them for who they are. But we cannot lose sight of the fact that it is our obligation as parents to give them every opportunity to be all they can be and to enjoy all this world has to offer them. Should there be a cure? Absolutely. If a cure could help my child to read, I would give it to him in a second. If a cure could help my daughter to speak and tell me how she feels, I would steal it for her. If a cure could aid my son in his social interactions and help him make friends, there is nothing I wouldn’t do to get it for him. No, I would not want to make my children different, but I most definitely would want them to be better. If that means we call autism a disease so we can find a cure, so be it. We struggle every day with the adversities this thing called autism throws at us, and we will struggle with it for the rest of our lives willingly because we love each other in this family. However, if someone handed us cure tomorrow that would make any one of us more “normal” we would take it in an instant!