Tag: Stigma

Being Disabled – #Autistic December 1/31

Being Disabled – #Autistic December 1/31

by alexforshaw ♥ 3 Comments
A close-up of a UK disability Blue Badge showing the white on blue disabled symbol on its lower left corner

I never imagined when I used to see or hear about disabled people that one day it would include me. I don’t think anybody does: unless you are disabled yourself it’s always something that affects other people. Less fortunate people.

Be honest: that’s how you think of us, isn’t it? You feel glad–lucky–that you’re not disabled. Because that would be awful. Am I right?

That right there: that’s stigma. You feel sorry for us, pity us, hope you never become one of us. You see us as damaged people. You can’t believe it’d ever affect you, that you could ever become disabled yourself.

I know, because I used to feel that way. Disabled people were some other group, over there, not like me. There was a difference, a gulf that could never be crossed: that could never be me.

I had no instant of revelation, no light-bulb moment. The idea that I was disabled myself took time to sink in. I spoke the words long before I accepted the truth and believed them; I denied it to myself. I worked full-time, had my own home: how could I reconcile that with being disabled?

What I felt was internalised ableism: I had become accustomed to equating disability with failure. Really accepting that I was disabled meant confronting my own prejudice, admitting it existed, and then unlearning it.

That journey has been a hard one. It’s more than uncomfortable to admit that you don’t live up to your own moral standards, but faced with a choice between denial and change I realised I had to change if I was ever going to accept myself for who and what I am.

I am disabled: that means there are things I can’t do and situations I can’t handle. It doesn’t mean that I ought to be able to do those things, and it doesn’t mean I’m a failed human being: I’m not. And I accept that.

This is the first post in Autistic December, a daily series about the impact on my life of being autistic.

Is #Autism A Disease?

Is #Autism A Disease?

by alexforshaw ♥ 0 Leave a Comment

Autism Illness (1)

Some insist that autism is a disease, others are equally firm that it is not. Are there really two sides to this question?

What is a disease?

Everybody knows what a disease is, right? It can be an infection by some virus (like measles). It can be a genetic condition like Huntington’s Disease. It can be a parasitic infestation like scabies or tapeworm. It can be something where the cause is identifiable such as chickenpox, or where the mechanism remains unknown (Alzheimer’s). It could be trivially treatable or incurable.

Except that there are exceptions. We don’t usually refer to food poisoning as disease, nor head lice. Toxaemia and gastroenteritis are generally called conditions, not diseases; however influenza is invariably called a disease. Mange is, fleas aren’t.

The fact is that even in a medical context disease doesn’t have a clear, unambiguous definition. There’s no hard and fast rules for what is and what isn’t a disease: it largely comes down to habit of use.

In principle anything that is outside the norm–outside the majority of people–could be classed as a disease. In practice, it’s only those differences that are seen as having a negative or detrimental impact that get called diseases.

What is Autism?

Autism is a neurological difference that manifests in a number of ways primarily affecting the style and ease of social communication, and the range and depth of interests. It is also associated with differences in perception and sensory processing.

It is primarily genetic and is a lifelong condition. Autistic people typically achieve developmental milestones on a timescale that falls outside the typical range for non-autistic people.

At least 1 in 100 people are autistic. For a number of reasons there remains a bias towards diagnosing males, although the gender ratio is trending towards parity over time.

In an environment that provides appropriate supports for communication, sensory or other needs–an “autistic-friendly” environment–autistic people are able to function well.

You mean it is a disease?

There’s no technical reason why you can’t call autism a disease. It’s characterised by traits that fall outside what is typical for the majority of people.

But, at the same time, many autistic people don’t consider autism as negative. We don’t see the traits as having a detrimental effect on our lives. But even when aspects of autism are disabling, most still do not see autism itself in a bad light.

So it’s not a disease?

It ultimately comes down to perspective. There is a shift occurring among researchers and professionals towards the view of autism as difference rather than disorder. This is what many autistic people have been saying for years: we’re not broken or defective.

The important thing is that most autistic people see autism as a key part of ourselves. Without it we would not be who we are. Identifying with autism means that negative portrayals of autism are also negative portrayals of autistic people.

Referring to autism as a disease tells autistic people that you see it–and by implication us–negatively.

Don’t call it a disease

Calling autism a disease has harmful effects. It is stigmatising and causes autistic people to be seen as defective, damaged–even unclean. This fuels prejudice and discrimination against autistic people, causing real harm.

The language that is used in discussions of autism and autistic people matters a great deal. Historically autism has been described in terms that focus on perceived deficits and this has shaped the thinking around it. When everything is about what autistic people can’t do, the things we can do get ignored and we are simply seen as defective.

It’s well-recognised that when something is talked about using words that have negative associations, the thing being talked about becomes seen in a similarly negative light. When autism is portrayed as a tragedy, parents fear a child being diagnosed: this is not good for either parents or child.

Autism is not intrinsically good or bad, it’s a difference in the way the brain is wired. Avoiding negative language–not calling autism a disease–benefits autistic people and our families by shifting the conversation. Instead of pity and regret we can start thinking of autistic people as people with needs. We can talk about support and accommodations, improving autistic lives today.

Autistic, not with autism

Autism is central to autistic people’s day-to-day lives. It shapes how everything in the world is experienced, an experience different from that of non-autistic people. It’s impossible to conceive of life without autism because it’s simply there, shaping everything that goes through the brain.

Attempts to downplay the significance of autism, using linguistic tricks like “person with autism” that attempt to artificially separate the person from something we feel is intimately entwined in our being, strike a false note. It comes across as if the speaker feels autism is something to be hushed up. Something shameful or dirty, kept at arm’s length.

A matter of respect

Talk of autism as disease feels the same way to autistic people as person first language. It’s a judgement against us, a flag that signals a lack of acceptance. It says that the autistic person is viewed as being tainted, abnormal, defective. It feels like being on the receiving end of hate speech.

If you’re serious about respecting autistic people you must listen to us and our concerns. Stop pathologising autism and referring to autistic people as problems to be solved, a disease to be cured. Respect our differences. Respect us.

References

  1. Boyd KM (2000). Disease, illness, sickness, health, healing and wholeness: exploring some elusive concepts. Medical Humanities;26:9-17. https://mh.bmj.com/content/26/1/9
  2. Lai MC, Lombardo MV, Baron-Cohen S (2014). Autism. The Lancet;383:896-910. https://www.ncbi.nlm.nih.gov/pubmed/24074734?dopt=Abstract
  3. Baron-Cohen S (2017). Editorial Perspective: Neurodiversity – a revolutionary concept for autism and psychiatry. The Journal of Child Psychology and Psychiatry;58.6:744-747. https://onlinelibrary.wiley.com/doi/full/10.1111/jcpp.12703
Writing #Autistic Characters—An #ActuallyAutistic Perspective

Writing #Autistic Characters—An #ActuallyAutistic Perspective

by alexforshaw ♥ 2 Comments

Writing Autistics

Writing Autistics

do

  • ask us for our help and input
  • listen to what we tell you
  • respect us as unique individuals
  • remember we have feelings
  • give us subtle, complex motivations
  • portray adults as well as children

don’t

  • ridicule our differences
  • treat us as objects of pity
  • assume our goal is to be like you
  • use our behaviours as a running joke
  • fall into lazy, outdated stereotyping
  • expect praise just for mentioning us

We need role models, not ammunition for bullies.

Does Mental Illness Scare You?

Does Mental Illness Scare You?

by alexforshaw ♥ 4 Comments

The brain is a mysterious organ. Unlike the heart, lungs or kidneys, its workings are shrouded in a veil of complexity. For all that we know about the chemical and electrical activity it exhibits, for all our mathematical models of neurons and synapses we simply cannot fathom how its activity gives rise to self-awareness and consciousness.

Throughout history most people have viewed this consciousness as a uniquely human trait. Yes, we are learning that this is not the case and other animals also have consciousness, but the idea that the human mind is special persists.

Many people cherish the idea that we are set apart from the rest of life on earth, that we are more important as a result of the functioning of our brains. And perhaps this is one reason why mental illness carries such stigma.

When other organs malfunction modern medicine can often repair the damage, or even replace the damaged part (heart valve replacement, pacemakers, kidney dialysis, transplants). There is confidence in these treatments: we can understand a surgeon replacing a worn out valve in the same way that we understand an auto mechanic swapping out a fouled spark plug.

When it is the brain that suffers damage or illness things become much less certain. Because we do not understand its inner workings and how consciousness arises from them there is a deep fear that mental illness will corrupt who we are. That we would no longer be ourselves. We fear the unknown.

Most mental illnesses are also invisible. There are no outward physical signs that somebody has depression, schizophrenia or Bi-polar disorder. You never know. And that not knowing triggers fear, compounded by a general ignorance about mental illnesses.

The media doesn’t help (surprise, surprise!) by actively seeking to explain many violent acts as the result of mental illnesses, and often describing the antagonist in thrillers and horror movies as mentally ill. Schizophrenia in particular has a long history of being unfairly linked to violent behavior. I’m not saying that schizophrenics are never violent, but the reality is far, far removed from the picture painted in popular culture.

One statistic relating to mental illness and violence does stand out, however. A person who suffers from a mental illness is far more likely to harm or kill themselves. The misplaced fear of the mentally ill person needs to be replaced by a fear for them.

Because you can help by fighting the stigma, by being there when somebody you know is affected — because it’s more likely than not that somebody among your family and friends will suffer from a mental illness at some point.
Mentally ill people are often afraid to disclose their illness because of the stigma. It can be a sure-fire way to lose friends overnight. It might lose them their employment. How would that feel? Not only are you ill but now you’re on your own with no job. “Good luck with that!” Can you understand why that would push some people to kill themselves?So yes, disclosing mental illness can carry a sizable risk. But not disclosing means that there’s no chance to get the necessary support. It’s a catch-22 situation, and all because of the stigma. You wouldn’t shun somebody because they had asthma, would you? So why do it when an illness affects their brain?It’s not a difficult concept. Here’s a person who is ill. Support them. Simple.