Calling people in when they do the seemingly impossible to support us is as important as calling people out when they don't see our humanity." - Amy Sequenzia, "A Note to Parents"

A Note to Parents

I started writing about autism and disabilities over 10 years ago. At the same time, I started reading what other disabled people were writing. I met many of them, most of them Autistic. I attended conferences, presented in some of them, travelled a lot. I also took part in actions for disability rights, and for the rights of Autistics to be ourselves.
Many times I criticized organizations that claim to advocate for Autistic people, I exposed lies and abuses directed at us by such organizations, I joined other Autistics in telling the stories of Autistic people murdered by parents and caregivers. Their lives were portrayed in the media as tragic and unworthy, while the murderers and abusers received sympathy and understanding. 

I lent my voice to the ones whose voices had been silenced.

If you have read my articles, you know that I could have been one of the silenced ones – devalued, abused, ignored, neglected, forgotten. I have been abused and mocked, called less than human, but I am one of the lucky ones. I found people who loved, cherished, supported, and valued me. I was finally accepted, heard, seen – at least by some.

I know other Autistic and disabled people who have had a similar experience. So today, I want to write about those who not only love us, but who stand with us, being the amplifier of our voices when needed, being by our side at all times, even carrying us through some harder moments, keeping us alive. I know many of them, and I hope they know I value them. They are parents that have been through emotional rollercoasters as their children were diagnosed and grew up. They fought for their children’s rights, and they continue to fight and support their children as they reach their teen and young adult years. Some of them continue to support older adults like me, who will always need more than just words of encouragement. We will always need allies in fights with biased, ableist institutions. Some of them are not parents but are dedicated caregivers, real friends, who are ready to walk alongside us in our path, our life.

I have criticized parents of Autistic kids who use social media to gather sympathy, while exposing their kids, unconcerned about their privacy and rights as humans. Worse, some parents exploit their children’s hardest moments for profit. I stand by my contempt for such abusers.

But I do not ignore that, for some families, having a child like I was – or like the adult I still am – can be difficult, draining, stressful. They have to be ready all day, every day, to step in when needed, to help navigate institutional obstacles, to take the lead when we lose our most basic skills.

Life is complicated, and living as a disabled person requires a lot of adaptations, since the world is definitely not without huge obstacles. Sometimes our disabilities are also related to health issues and we might need someone with us constantly. Since we are humans, we have human emotions, we are not always nice, we might act or react in ways that might hurt others, sometimes physically hurt them.

For example: I need help with most everything, and I have medical issues that require someone all the time on alert, just to keep me alive. I know Autistic people who get so overwhelmed by things that seem “normal” to neurotypical people, and they can only navigate daily life with a few trusted and known family members or caregivers. That can make a parent who doesn’t have a lot of supports very tired, distressed, frustrated, even leading to some depression. I have seen it. I know some disabled people who can go day and night screaming and making other noises. I lived with one for a while. It was hard to be in the same place with this person for a long time. I lived with someone, a disabled young man, who would suddenly start hitting people, including me, because they would get frustrated with something that wasn’t clear to anyone at the time.

I know parents and other caregivers who get exhausted by the lack of available services which would not only help the people they care for, services that would help them too. Yet, they still respect their children, the friends they help. Like me, some disabled people leave home for a few years and join a community where they live with other disabled people and assistants. It is not the ideal – to have segregated or isolated places for disabled people – but as long as the world is inaccessible and unaffordable to our families, “farm communities” or other similar places are the only option for some. Besides, those places can, and many are, part of a community. They are just not in a town or city for reasons that are not the simple wish to hide or isolate us. I have the experience of living in such a place and can list the good and the bad. Like the examples I gave, and knowing the families, I can say that there were no better options at the time. We were not sent to a place like the Judge Rotenberg Center. We were not shocked as punishment. We had structure, places to take long walks, we had friends and we formed relationships that lasted. We travelled and we enjoyed events in the nearest towns. Our parents should not be lumped together with abusive, neglectful parents, or with families that don’t do enough for the fight to include all.

This essay is to call in those parents and caregivers who are not only real allies, but our lifelines. Calling people in when they do the seemingly impossible to support us is as important as calling people out when they don’t see our humanity. Some people will say this is only what parenting should be, love and accept your children. That’s what parenting should be, but it doesn’t mean that it is easy. Those who see us as human beings are not heroes but we can, and should, acknowledge that they do have to navigate the hurdles society refuses to remove, so they can help us remove the obstacles that disable us. We are disabled by society but we also have impairments that many people, including other disabled people, would have a hard time with if they had to be the ones supporting us every day. This is what many parents learn how to do, and they do it all with love and respect, even if many in the disability community use the rhetoric on inclusion but don’t come up with practical solutions for so many of us, the ones that only have our families and close friends to walk alongside us.

To those parents, to those caregivers I say: I know what you do, I know it can be hard, I see you.