Ableism: we know it is everywhere and we know it is the reason why disabled people fight the normative society that chooses to make us invisible.
The idea that we should try to fit a pre-determined, arbitrary way of doing things excludes disabled people by default.
We are often ignored, many times abused, used as props for inspiration porn, and generally left out – unless we change how we do things, unless non-disabled people feel at least a little comfortable in our presence.
Despite laws and general common sense, any accommodations necessary to make a little easier for us to navigate the world are still perceived as an annoyance, as burdensome.
One can see that by how difficult, and sometimes humiliating, it is for disabled people to travel. One can see that by how many times basic accommodations, like ramps, are overlooked, forgotten, which excludes some disabled people from public places and events. One can see that by how hard it is to find closed captioned videos, or videos with audio descriptions.
Autistic people experience some of the same ableism other disabled people do, even more so when they are multiply disabled. But more than the physical barriers, more than the bad experiences with travel and with the appropriation of our images and lives when we are used as props, we also experience the ever-present expectation that we should be as close to normal as the majority is comfortable with.
We are expected to “work hard” – starting when we are toddlers – to be what “mom, dad and the whole wide world dreamed about”. We are not allowed to simply be. Being “normal” is the goal. When we cannot “be normal” we should, at least, “act normal”. If we don’t or can’t, we are failures, not good enough.
This is why normalcy is an ableist concept.
I reject normalcy.
I am not normal.
I don’t look anything close to typical.
I am very disabled and I don’t try to pretend that I don’t need help.
I am not ashamed of being disabled.
When I meet people I am awkward and shy. I might type and have a conversation with them but usually I get too overwhelmed. When I am in a “safe place”, when I am typing online, it is much easier. It takes more than one face-to-face encounter for me to feel not so overwhelmed, and to be able to engage more. Face to face meetings involve exchange of energy, and this is overwhelming. Even good, happy energy can make my brain spin. After meeting a few times, it gets easier because I already know the person’s energy and it is already processed in my brain.
Even though I am comfortable with my way of communicating and having a relationship with people, or with the way I initiate and maintain a friendship, I am still expected to “try harder”. The expectation is that maybe, if I do improve my “performance” and engage faster, be less awkward, type faster and type “small talk”, then my very visible disabled self can be masked and it will be easier for everyone to accept me.
I cannot be who I am not. Nobody can. Some can fake for some time. Some need to fake sometimes (for example: some jobs are safer if Autistics can “pass”). Nobody can fake all the time. Nobody.
This is one reason why I speak up against normalcy.
Speaking, walking, hearing, standing still, not flapping, moving freely, acting as an extrovert, being social, being at ease with every single person, engaging in “small talk”, those things are considered “normal”. But they are not the RIGHT thing. They are the majority’s view of what is acceptable.
I reject normalcy and I reject compliance.
I rebel against that.
I’ve written about how ABA is damaging to Autistic people. It takes away true choice, it is bad for our self-esteem, it forces Autistic children to learn in ways that are not natural to the wiring of their brains, it interferes with how they process things.
I want to say this: learning how to get dressed, how to take care of personal hygiene is not “behavior”. Neither is literacy. The former would be appropriate for OT. The latter is according to each child’s personal timing since autism is a developmental disability. If you are paying ABA for these reasons, you are wasting time and money, at the expense of your children’s right to be themselves.
Even if a child, or adult, never learns how to do those assumed to be “basic and trivial” things, there shouldn’t be shame in it either. Being disabled is not shameful.
I hear, over and over, parents and professionals saying that they don’t want to “force” their children to do things, they only want their kids to have an easier time in a world that is not very accepting of them.
I hear them saying that they don’t care if the child is not “normal” but they want the kid to “act and learn” like the other children.
The statements are contradictory and they feed the ableism, already so pervasive in our lives.
One thing needs to be clear: we aren’t, and will never be, normal.
And this is ok.
Another thing needs to be clear: acting normatively, doing things in a normative way, only feeds the already well-nourished ableism. The majority’s way is not the right way, nor it is the only way. Teaching compliance goes against acceptance.
As I already mentioned, “passing” because it is safer at the place of employment is a personal choice and sometimes necessary. But having the support of loved ones to be ourselves is also necessary.
When parents of younger Autistic children say they are so proud and accepting of their kids, at the same time saying that they want the children to do things in a neurotypical way because society is not ready for the Autistic way of doing things, they are not being accepting, and they are putting a big burden on the child’s back: change who you are or the world will hate you.
There is some truth in the statement: the world might hate us if we stand proud as Autistics. But it is not fair to anyone, especially a child, to have to fake an identity in order to comply with a bigoted idea.
Ableism is prejudice. Our neurology cannot be “modified”. Children being trained to pass might please their parents, or society, but they will miss on one important aspect of their identity: they will never really know who they are. They will live their lives asking themselves who they are supposed to be in order to please others.
Society is not yet ready for us. This doesn’t mean we have to comply. It means we have to defy. Changes don’t happen through compliance, silence and obedience.
Some parents have told me that they love their children so much (which I believe they do) that they’d rather have them working very hard now, as a young age (sometimes 40 hours a week, plus school) so that they can do things in the “normal” way as they grow up.
This saddens me. Those parents ignore that faking an identity is not possible for a long time. The conditioning of their children only helps the parents, it brings them relief. But there are long term effects of being forced to fake all the time.
Those parents also say that their children are happy being accepted for doing things the “normal” way. Maybe some of the children are. They are children. They still don’t have the ability to discern. They are pleased and maybe even happy if they receive a smile and a compliment.
Identity, though, cannot be faked forever. It confuses and hurts.
It is easy to say “I accept my disabled child, my Autistic child”. True acceptance, though, requires standing with your child, as they are, as they face a normative society. True acceptance requires standing with your child, as they are. It requires raging against ableism.
Normalcy is an ableist concept. If you want your child to act normal, you are being an ableist.
My son turned 3 today. He’s nonverbal. It has been a stressful week for me. Celebrating his birthday with 3 year olds who can have conversations with their parents has made me feel angry. He’s a happy baby who loves me. I feel like I’m failing him because I want him to be normal. I hated the word ‘normal’ for a long time now. When he was a newborn, his weight wasn’t normal enough. From then on, it’s been a constant struggle to reach that normal scale. Each milestone come and go, and he’s failing to reach normal. As a parent, I want to love him for who he is and not for who I want him to be. I’m not sure I know how to do that. Thank you writing this. I wish I had a mind like you so that I can love my son the way he deserves.
Amy thank you for writing this!
Hi Amy. I’m writing a piece for Spectrum magazine (put out by the Simons Foundation) about the schism between those who believe ABA therapy is the most viable form of therapy for people who are autistic vs those in the neurodiversity community who say it is hurtful. I would very much like to hear from people who had ABA as a child about their experiences with it. My email is firstname.lastname@example.org if you would be interested in corresponding. Best, Elizabeth DeVita-Raeburn
Hi Amy! I really appreciate your writing, as it has done a great deal to educate me. I have an unrelated question for you, that I’m hoping you will be kind enough to answer. Did either of your parents ever talk to you about being autistic? If they did, what did they get right, and what do you wish they had said or did? My nonspeaking autistic daughter is 8, and I want to talk to her about autism in a thoughtful and respectful way. Any of your insights would be greatly appreciated. Thank you for your time!
Thank you for reading Jennifer.
No, they didn’t. They were convinced to send me to a “school”, a treatment center that was really an institution. All I heard there was that I wasn’t good enough and that I would never learn anything.
I think that it is important to let kids know that Autism is part of them, that it doesn’t make them “better” nor “worse” than anyone else. That because Autistics are not the majority of people, sometimes things can be difficult and sometimes people are not going to be very nice, or understanding.
Also explain to her anything she experiences as Autistic: if she has sensory overload, explain what it is and the ways she can make everyday life better (suggestions by people who have similar sensory overload). If she cannot yet communicate what she wants and needs in a way that most people find easy to understand, explain to her that you are going to help her finding a way and that you will try to educate people.
Let her see her community, our community. If possible, meet some Autistic adults who are advocating for acceptance. Let your daughter meet them (us), if possible.
It depends on what her main qualities are and what her difficulties are. I don’t want you to share her personal information but you can contact me via email email@example.com if you want more detailed input
This is great. Thank you for writing it.
Thank you so much for this. I am currently suffering from autistic burnout from nearly three decades of passing. I am suffering from burnout from trying to be normal and leave up to the norms pushed on me. So thank you. I needed this today.