Autism Interview #161 Leigh Spence on Ableism

Leigh Spence is an autism advocate and vlogger from the U.K. This week she shared her experiences with ableism as a late-diagnosed adult and offered advice for teaching ableism to younger ages.

Can you tell me a little bit about yourself? What do you like to do? What are you passionate about? 

Apart from attempting to be an autism advocate, my current special interest is True Crime. I can often be found listening to true crime podcasts while I am writing or do other tasks. I do also like being wrapped up in a comfy blanket, cat in lap, while watching sci-fi tv shows or films. I recently turned 36, and I’m in a relationship with a wonderfully understanding man.

Where are you from and how would you rate autism acceptance in your country, region, town, etc.?

I currently live in Derbyshire in England (I am originally from Yorkshire). In terms of acceptance, I think it is quite good. It is more awareness of what autism actually is and support for autistic people (particularly adults) that is lacking in my area. I found the diagnosis stage easy in comparison to getting any help or support post-diagnosis.

I read on your blog that you were looking for work. What has that process been like? What are the most difficult obstacles to finding employment?

I found the process easier than I expected, but I do come across well on paper. I also had support from my local job centre. Through them I received help from Reed, who helps disabled people find employment. With their help and support, I did find a job, but my only obstacle now is the current lockdowns, as my place of employment is closed temporarily. As soon as lockdown ends, I will be able to start my new job. The main issues I had finding employment was the lack of available jobs, but Reed helped me with their access to more potential jobs. They also helped me to write my CV and advised me about declaration of disabilities.

In what ways have you experienced ableism as an adult?

You don’t really realise how often you come across ableism every day until you stop and think about it. Most places are more accommodating to physical disabilities than to hidden ones. Companies will go out of their way and spend money to accommodate physical disabilities (which, of course, they should) including ramps, easy open doors, and disabled toilets, but most of these places will also have loud music playing and bright, fluorescent lights. With around 700,000 people in the UK diagnosed autistic, companies are not doing enough to make the spaces they own autism-friendly. This number would be higher if you included people who are not yet diagnosed and those who are not autistic but also have sensory issues.

I constantly experience this–and not just in supermarkets. I have experienced this visiting the job centre and even attending doctors appointments, which means I have to constantly adapt to this. I can’t go out of the house without taking my headphones, iPad preloaded with podcasts, and sunglasses (which aren’t cheap due to my eyesight). I don’t think it is fair to ask 700,000 people to have to constantly be on edge and have to pay out to adapt to these sorts of places. It doesn’t take much for a supermarket to not play music or to have better lighting. It doesn’t take much for it to be on a medical record that the patient they are about to see has sensory issues, therefore ask the patient if they would like the light dimmed.

When I went to the doctor to ask about a referral for my diagnosis, the doctor remarked ‘but you have coped so far,’ assuming that I had coped, despite the medical records on her screen showing how I had spent the past 15 years not coping with the amount of medications I have tried in the past, referrals to different mental health departments, and counseling sessions. As I have only been diagnosed for a year, I haven’t experienced ableism as much as others have, but I have had the typical remarks of how I am ‘high functioning’ and how I don’t look autistic.

In your recent vlog on ableism, you share how you are comfortable “calling people out” on their ableist language because they may be harming others with that language, and you can play a part in stopping that. What’s an example of a time when you had to do this? What did you say and how did they react? 

Unfortunately, I have tried to challenge my local stores about how they are stressful spaces for autistic people or others with sensory issues via their customer services, but I am told to talk to the manager, which is another ableist answer, because it is extremely difficult for me to arrange something like this.

When I was told at the job centre that I was ‘high functioning,’ I asked why they thought this. They weren’t expecting me to respond this way and floundered a bit before giving a rubbish answer about how articulate I am, etc. I told them that was patronising to autistic people and to myself. Just because I am autistic, does that also mean I am not supposed to be intelligent and not be able to hold down a conversation? I opened up a conversation with that person about how autism is complicated, and labelling someone can limit them severely in different ways. Hopefully that person will think twice before judging an autistic person without knowing them.

Do you know of any initiatives to teach ableism to younger students, or other formal approaches to teaching ableism? What can advocates/allies do to help spread awareness and create future generations where ableism isn’t the norm?

In a classroom, I have always found that showing children rather than just telling them sinks in better. Using physical obstacles to represent hidden ones often works. For example, placing various hurdles of different heights in the way of getting in/out the classroom, in between desks, etc to make the class just that little bit more difficult and then explaining how that represents the hurdles that are in the way of people with hidden disabilities every day, and then showing how easy it is to remove those hurdles. Expecting a smaller child to have to walk around a hurdle because they couldn’t step over is just one way of showing ableism, but there are various other techniques available online to teach the lesson in different ways. It all depends on how the children in that class learn and using the best technique to teach them.

Children are taught about discrimination in terms of race, sexuality, and even disability, but this is often only in terms of physically disability and not how we can also accommodate those with hidden disabilities, and they are not taught that ableism is also a form of discrimination. The more people creating various types of content, then the more voices there are in the world teaching these lessons, creating awareness, and trying to change mindsets. It’s been a while since I was at school, but I remember the assemblies on drugs and safe sex, but there was never any about how to treat others with kindness and how not to judge, I hope this is something that has changed over the years. If not, then it should.

Is there anything else you’d like to talk about that I didn’t ask?

It’s about time that autistic people get more recognition in terms of their value, their needs and also being taken more seriously when we use our voices.

Hear more from Leigh on her YouTube Channel: One Awesome Autistic

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