Disability, Safety, and Value

Disability and Safety by Amy Sequenzia on OllibeanDisability, Safety, and Value

by Amy Sequenzia

This post will mention the attitude of some parents. This post is not about love or wanting the best for a child. It is about being conscious that ableism exists, and that you might be, even if unwillingly, contributing to the systemic ableism in our society (I urge you to read the links. Click on the highlighted words throughout the post).

I am a very disabled non-speaking Autistic woman. I need many supports. Many of you already know that.

Some of you also know that the supports I needed throughout my life weren’t always available, including the human support I need to type. By human support I mean ethical and respectful partners.

I am still very disabled.

If you met me, you know that, sometimes, I can look disconnected, uninterested. If you do know me, you know that my brain is absorbing information faster than it can process the information.

I am very disabled.

As I process information and type posts like this, I don’t shelve my many disabilities. I might have to stop several times before finishing a paragraph, or it can take me days to finish a post. As I type, I am still the same disabled me.

Then, when I write that Autistic children should be respected, that privacy and dignity are our rights, that everyone communicates, I see many parents commenting that their children are not “successful” like me, that they – the parents – are “happy for my success” but that they are “realistic about their children’s disabilities”.

Why can’t your child succeed?

When confronted with the fact that I was silenced for many years until I was able to have consistent support, the parents say things like:

My child is incontinent.

So, because they are incontinent they cannot succeed as disabled people?

My child has seizures.

I am also epileptic, why can’t your child succeed?

My child can’t go out and not have a meltdown.

Some of us become overwhelmed in certain situations. Why can’t your child succeed?

My child self-injures.

Some of us, including me, do too. Why can’t your child succeed?

My child cannot dress themself.

Neither can I (nor Stephen Hawking). Why can’t your child succeed?

My child cannot understand safety.

I could walk into traffic anytime. Why can’t your child succeed?

My child gets violent.

I can direct you to some resources to help you understand why some people get violent. Why can’t your child succeed?

It is as if the parents are trying to find excuses to not believe in, or not value their children as disabled human beings.

Words and actions matter.

It is as if “being realistic” means that if we need some type of help, we are not good enough. If we need many supports, we can never succeed in anything else. If we need many supports, we are either someone who can’t be expected to succeed (even if the “success” is often intangible), or someone who is a burden to be dealt with.

This is not “being realistic”. This is devaluing disabled people.

I know the realities of living disabled.

I know about stigma.

I know about difficulties in finding supports.

I know parents need respite.

I also know that language and actions matter.

I also know about abuse and violence against disabled people.

I also know that parents can set the tone for how the world will treat their children, and that if parents show respect, and presume competence, they will – at minimum – make others consider the possibility that “severely” disabled people can succeed. 

If parents keep pointing out deficits, that’s all the world will see.

If parents allow others to use ableist language and actions against their children, the world will not value them now, and when they are adults.

Words and actions matter. They are part of ableist attitudes that are deeply ingrained in society, which neglect disabled lives and put disabled lives in danger. Even when parents find it difficult to deal with some aspects of a child’s disability, refusal to value the disabled child – by assuming that only the ableist definition of success matter – will only add to the systemic ableism we experience everyday.

Violence Against Disabled People

Here are examples of things that happened within just a few random days around the world:

Police shoots unarmed black man and justify it by saying that the target was the unarmed Autistic man with a toy truck.

Hospital asks the court, and wins, the right to kill a disabled baby, against the wishes of the parents.

Many disabled people are murdered in Japan, in a meticulously planned and carried out attack because the perpetrator believes disabled people should not live. Notice that after terror attacks around the world, there is a media frenzy and hashtags of support. After this attack in Japan, only the disability community is calling it a hate crime .

A disabled teenager decided to die via assisted suicide and raised thousands of dollars, and people not only donated but showed up to celebrate her decision. Meanwhile, a disabled activist has been trying for months to raise enough money to get a wheelchair, something they absolutely needs in order to be able to leave their home and work for all disabled people.

The Same Ableist Attitude

Of course those tragedies are not the same as parents complaining that a child cannot get dressed, or that a child does not understand safety. They are, though, part of the same ableist attitude. Demanding the same respect, dignity, privacy and fair treatment of a disabled child is not the same as not being realistic. Even if the disability is perceived to be “the most severe”, being disabled is not shameful. Being realistic about the difficulties and impairments of a disability is fair but only if you are also realistic about how ableist attitudes will increase the chances of your child being a sad statistic, or part of a tragic event.

So, the next time you read about Autistic adults saying that ABA hurts and is not helpful, that all disabled people deserve dignity and privacy even if you say that “they don’t understand”, remember how, in the cases I mentioned, people who targeted, dismissed or murdered disabled people used the same rhetoric a parent recently used to talk about his son’s disability: that raising him was like a “slow death” (as evidence, he listed his son’s support needs).

Fix the World, Not Your Child

Being a parent of a disabled child is not a heroic act. Being a parent of a disabled child, while also wanting to be an ally and make sure the child’s life will be as valued as the lives of non-disabled children requires some extra work. Not extra work to “fix”, or “improve” an aspect of the disability but work to fix and improve how the world will see and treat the children so that they can have accessibility and supports, and also be safe to live disabled.

So, parents, here’s one thing you can do: Instead of listing all the reasons why your children’s disabilities, and the difficulties your children have, worry you so much, and makes you feel like you need to tell everyone, how about you start listing all the problems with an ableist society that is making your children’s lives so hard, not welcoming them, and putting them in real danger now, and as they become adults? That is being realistic.

References:

SIU investigating after Ottawa man taken to hospital critically injured following arrest

Severely disabled baby should be allowed to die, judge rules

Japan, Hate and 12 Days by Dave Hingsberger

Hate Crime: A killing rampage targets disabled people

Help Dominick Get Back His Freedom

 

About the Author:

Amy Sequenzia is a non-speaking Autistic, multiply disabled activist and writer. Amy writes about disability rights, civil rights and human rights. She also writes poetry.
Amy has presented in several conferences in the US and abroad, and her work is featured in books about being Autistic and Disabled. Amy is deeply involved with the Neurodiversity Movement and has been outspoken about the rights and worthy of disabled people.
Amy serves on the Board of Directors of the Autistic Self Advocacy Network (ASAN), and the Florida Alliance for Assistive Services and Technology (FAAST). http://nonspeakingautisticspeaking.blogspot.com and Autism Women’s Network. You can also follow Amy on Twitter at @AmySequenzia.

2 Comments

  1. Viv Field March 10, 2017 at 4:44 am - Reply

    I only recently got directed to your blog and found this article. I am a parent of a 9 year old boy with ID, CP of unknown genetic origin. And yes, I just labelled him based on his Diagnosis not who HE is. He is one special light in a world that can be very dark. I have real difficulty in this world in trying to get society, carers, therapists, doctors, and just about ANYONE to first ‘Presume Competence’ for ALL the kids I meet day in day out. Your words resonated with me so much, in my heart I often double guess my motives, and agonise over decisions I make on my sons behalf. He is non-verbal but he still ‘talks’, hes quite proficient with his iPad AAC and surprises people with his level of understanding. His parents (US) have known that he had potential from day one, and we have set about trying to give him opportunities to achieve what he wants to achieve. Thank you for providing a voice for all those out there who maybe don’t have one. I find it sad that we get caught in this trap of saying what they ‘can’t do’ vs what the can. I am guilty of it too! I just need to remind myself HE will do whatever HE wants to do and I am here to help him achieve it and live a good life.

  2. windsweptarmadillo August 7, 2016 at 5:21 pm - Reply

    I needed to read this. This is GOOD.

    I am a neurodivergent woman and mother of a 9yo autistic son. Your words teach me, and I want to better. Thank you.

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