Tag Archives: disability rights

An Argument Against Pathologizing Autism – What Others Had to Say

In yesterday’s blog post I asked for thoughts regarding the pathologizing language that dominates most conversations about autism and those who are Autistic.   I received some terrific responses both here, through email and on Emma’s Hope Book Facebook page.  I also asked Emma for her thoughts, which she very patiently gave me and generously said I could post here.

Emma wrote, “Deciding autism is a medical condition eases the minds of those who profit from it.”

A couple of great links were sent to things that have been written on the topic or related topics.  This, from the Zur Institute entitled:  DSM: Diagnosing for Status and Money, focusses on the DSM and argues, “Historically, many clinicians have been unaware that the DSM is more political than scientific, that there is little agreement among professionals regarding the meaning of vaguely defined terms, and that it includes only scant empirical data.”

Another link sent was this one, Time to let go of the medical model by Jarrod Marrinon, which does not speak specifically about autism, but is certainly still relevant.

And this link from Nick Walker’s blog, Five Steps Toward Autism Acceptance is terrific with the first step being, “De-pathologize autism and Autistic people.  This, in particular, stood out, “Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations.”

Nick’s words were similar to what Emma wrote when I asked, “What do you say to people who need support and assistance in their daily life?”

“Why should they have to fight anyone to receive the help they need to live?”

I said, “Well, in an ideal world they wouldn’t need to, but some say that there is only so much money and available resources, so people need to prove that they need the help more than others.  In effect they are being forced to compete for the money that’s been allocated.

Emma wrote, “This sounds like an excuse so that people who do not need help can feel better about how others are treated.”

David wrote, “The obsession with behavior as the be-all-end-all of autism “science” and “treatment” is a superficial distraction and a formula for spectacular failure in addressing the underlying realities – both impairments and abilities alike – which Autistics experience and must cope with every minute of every day. The temptation to pathologize and treat behavior for its own sake is dangerously misleading and utterly beside the point. That boilerplate approach to autism HAS GOT TO GO.”

Toddynho wrote, “why pathologizing autism is harmful”

Compare and contrast the life experiences of LGBT people in contexts where homosexuality is pathologized and in contexts where it is not.

“Are there any studies showing the direct links to pathology language and harm and abuse of the people who are being pathologized?”

To me, it’s self-evident and obvious that groups that are pathologized on the basis of their way of being are harmed and abused in consequence.

“If we do not pathologize autism how will the people who require assistance receive it?”

On a massive, massive scale, the adult autistics who require assistance are either receiving no assistance whatsoever, or the meager assistance being received is grossly inadequate if not downright harmful.”

Toddynho goes on to say, “What we have is a society that is pervasively pathological. Addressing the most acute societal pathologies will improve things for autistic people broadly much more and much faster than any kind of autism-specific “assistance” strategies ever will — and moreover will make things a lot better for most non-autistic people too.”

Gregg wrote, “Its a false logic really. There is nothing inherent to medical model understandings of Autism that enables support. Just the opposite really Its well documented that social model understandings enable supports that are far more useful to autistic people. I see no value in pathologizing Autism except to the industry that has been built up trying to take advantage of parents of Autistic kids.”

I believe the medical model, which is the model used in almost every university and by most autism professionals does tremendous damage to the very people they are intent on “helping”.  To repeat what Toddynho wrote, “…it’s self-evident and obvious that groups that are pathologized on the basis of their way of being are harmed and abused in consequence.”

“Do you think pathologizing language is harmful?” I asked Emma.

Emma wrote, “Justifying decisions to ignore those who need help is not reason to make people feel ashamed of their existence.  People need encouragement to do good.  There will always be some who cannot, but this is not a good reason for everyone else to stop helping each other.”

 

From: ukdisabilityhistorymonth.com

From: ukdisabilityhistorymonth.com

 

“You Have To See The Horror, But Not Be Defeated By It.”

Yesterday I had lunch with the inspirational and brilliant James Cone, also known as the “father” of black theology, and a professor at Union Theological Seminary. For those of you who aren’t familiar with James and his work, he is the man who wrote the powerful book, The Cross and the Lynching Tree.  Sometimes in life you meet people, people who are special, for whatever reason, they reach us in ways that most people do not.  James is one of those people in my life.

Over lunch, as we got on the topic of various movements:  the civil rights movement, the disabilities movement, the LGBT (Lesbian, Gay, Bisexual, Transgender) movement, he said, “You cannot let your circumstances define you, who you are, your race, your gender or what others say about you.”  And I thought about Emma and how autism is perceived by many as a tragedy.  I thought about how I don’t ever want her to define herself by the way some may see her.  I thought about how that perception does damage to so many, how the way we perceive people is how we justify our treatment of them, how we treat them differently without even realizing it.  I thought about how I want to protect Emma from that.

I thought about the neurodiversity movement and how so many Autists are speaking out, asking for acceptance, asking for respect, asking to just be heard.  I thought about all those Autists who cannot speak, who are non-verbal and cannot communicate their thoughts, ideas and opinions at all.  I thought of those who are called “severely Autistic” and I thought of those who are, at this moment, in institutions or group homes run by people who may not understand them.  People who will use their ideas and perceptions of who they think they are to treat them in ways that will hurt them.  Who fights for them?  Who ensures their rights are respected and considered?   As I thought about all of this, I felt myself falling into despair.  And then James reached over and took my hand.  He said, “You have to see the horror, but not be defeated by it.”

I thought about all the stories I’ve read of Autistics who have been abused, often by their own family members, caregivers, or in homes where they were placed.  The people who cannot fight back because they do not have words.  The people who cannot fight back because even by communicating through other devices they are viewed as less than and so their words are disregarded.  I thought of those who have risen up and despite their challenges are blogging about their experiences.  I thought of the unimaginable horrors they have endured.  “You have to see the horror, but not be defeated by it.”

Those people have lived the horror, the rest of us are only witnesses to and only if we choose to be.  And that is a critical and striking difference.  We have a choice.  We can turn away if we choose.  We do not have to read their stories.  We do not have their memories etched into our brains, their experiences scarring our bodies.  We will not get triggered by those who behave in similar ways to the perpetrators of their abuse.  “You have to see the horror, but not be defeated by it.”

One blog I read not long ago, described in graphic, terrifying detail the abuse she was subjected to at the hands of her stepfather, mother, siblings and cousins.  As I read her post, I thought, this isn’t abuse, this is torture.   I felt nauseous reading her blog.   When I wanted to click the little red button on the top left corner of the page to delete it forever, I had to remind myself that this is her life, the least I could do was read what she’d written.  How do you take what you’ve read and continue living your life as you had been, before you knew what you now know?

“You have to see the horror, but not be defeated by it.”

And I know.  I know I have to keep writing about all of this.  I have to keep reading the stories, they aren’t going to disappear just because I’ve made the choice not to read them.

“Strive toward an ideal,” James said at one point.  He paused and then he said, “Write where the hurt is most.”

And so I will.  I will try.  It’s the least I can do.

Emma in one of her “pretty summer dresses.”

Read My Fear Toolkit published in the Huffington Post