Talking to Disabled People About Disabilities

I, and many other ill and disabled people, have been asked invasive questions by total strangers on multiple occasions. It’s ableist and uncomfortable to say the least.

 

But what about friends and family? How can they ask about our conditions without falling into the same category as those offensive strangers? Perhaps how can strangers be less offensive and invasive.

 

Step one is showing from the start that you have respect for their option to decline answering. Just because they know you doesn’t mean they’re ready to share every little detail with you. This can be done by opening the conversation with “I’m going to ask you a question about your health, but I respect that you may not want to answer. I take full accountability if I overstep here.”

 

Try to know what you can before asking. For example, I’m epileptic so if you want to know what kind of seizure I have try to know the common types so you can ask “do you have tonic-clonic seizures or absence? What does that mean?”

Everyone is different when it comes to how open they are to questions and educating so self-education, even the tiniest bit, can really help and shows you genuinely want to learn for the right reasons. This will make the person more likely to open up rather than take the approach of making you educate yourself entirely.

 

Don’t start with an apology. “Sorry I don’t know much but can you please explain [insert topic].” There’s no need. We don’t expect you to know everything, sometimes doctors don’t know everything, so we certainly don’t expect you to know everything.

Instead try “hopefully this isn’t too much to answer but or can you tell me where I can find out more.”

 

Remember it’s not our responsibility to educate you on everything.

 

Be confident but not overconfident. If you’re shy and stammering because you’re scared to ask, you’re probably going to frustrate the patient. Come in overconfident and you’re going to annoy the person in question. You’re just talking to a fellow human so treat them as such.

 

Sometimes one of my friends who asks a lot of questions will come in shy and I just want him to spit it out and start to worry it’s going to be offensive but most of the time he asks me the same way he asks me what I want for lunch and it makes it a comfortable environment for the conversation which makes it much easier to answer his questions. What also helps is he has a lot of patience as I try to find the right way to answer the question.

For example, he frustrated me by asking me to lift each leg one at a time and stared at me. Big no. This made me frustrated and uncomfortable. Turns out he wanted to ask how I can move (albeit with limited motion) my leg with functional limb weakness. Once I had the question, I could actually have a conversation, without being a science experiment, and give him the answer he was looking for. However, it wasn’t until the next day that I had the perfect answer which was okay with him because he genuinely wanted to know.

In case you’re now also wondering how it works; the wires that tell me my leg is there, that I can feel it and that it has strength to stand on are mis-wired so the messages from my brain aren’t getting through but weak signals from the wires telling to move it occasionally get through.

 

This one is especially important when talking to strangers or friends/family that have only just been diagnosed or started new treatment; “Please tell me to leave/change topic if this is too much” or “I know somebody else who appears to be in a similar situation, do you mind if I ask a question.”

 

I leave you with the most important note of all, don’t make assumptions or ask blunt questions like “what’s wrong with your face?”. This is incredibly disrespectful and falls under ableist micro-aggressions. I’ve had plenty of people, friends, family, acquaintances and strangers ask blunt questions (“what’s wrong with you now?” “why do you look like that” “what did you do this time?” “why are you so skinny?” “why have you gained so much weight?” “why aren’t you eating?” etc.) and it often triggers me to go non-verbal with my autism because I feel so disrespected and unsafe.

 

Be kind, open, respectful and ready to look up resources given to you and you should be just fine.

“You Don’t Look Autistic” Isn’t a Compliment.

My friend Hannah and I look nothing alike but we both look autistic simply because all autistic people look like themselves. Autism is a part of a person’s identity. There is no one look that autistics must have to match their identity.

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When you say “you don’t look autistic” it’s not a compliment and here’s why;

 

  • I am autistic. I know my identity but you’re questioning it. That’s incredibly uncomfortable, especially given that this comment is usually presents itself in a situation where the person receiving such comment feels the need the grin and bare in response. We don’t feel as though we can present a defence against the comment.
  • We must sit with that discomfort in a place where we are masking for extended periods of time until we can process it comfortably.
  • That comment reminds us of our ability to mask despite not wanting to have to mask to begin with.
  • It can be divisive between those who can mask well enough to get the comment and those who can’t when we just want to be a united community.
  • It reinforces a harmful stereotype. Need I say more?
  • It’s a concept that simply does not exist. It’s a misconstrued concept of how you think autism should “look” as compared to the educated knowledge that no two autistics are the same therefore you can’t have any one image to project.

 

Please stop using this harmful language and be an inclusive ally.

 

I am autistic therefore I look like I’m autistic even if it doesn’t fit your stereotype image. Just like I look like a Caucasian without looking like every other Caucasian.

Autism Acceptance Day 2020 – Unmasking

Last April, during Autism Acceptance Month, I told the world I’m autistic and proud. (You can click here to see the original post) That pride stands strong. However, I also said I would do my best to quit masking and that’s been harder than I imagined.

 

When you’ve been masking, without even knowing what masking is, for 20 years it’s hard to just stop. It’s engrained in your day to day systems. While yes, in my last post I mentioned that you can make mistakes while trying to mask it’s still a thing that, at some point, you start to automatically do when faced with situations that you believe involve the need for masking, which is most situations.

 

My masking stops me from stimming when anybody, even my own mum, is in the room, it stops me from talking about my special interests especially to the degree they interest me, it makes me stay quiet when I hear an offensive joke/comment because I can’t go against what society says, it makes me agree with whatever is suggested because I can’t be trusted making decisions as I don’t want to disrupt normality or upset anybody and I don’t make the jokes I want to because I worry only I will find it funny. I mask my emotions in various situations because my emotions aren’t the ones that matter here.

 

All of these places others above myself and prioritises them and their social comfort above my own. It minimises myself as a person and belittles me. Masking creates a new identity that isn’t me.

Those are ideals that are hard to break. Convincing myself I’m worth the same amount of space as neurotypicals (NTs) is a slow process for me and my low self-esteem. Identifying what parts of me come from masking and what parts are genuinely me is a complicated process and projecting my newfound self is possibly the scariest part. I truly do have to dig through all the “socially acceptable” rubbish to find the me I’ve hidden and learn who they are.

 

At times it’s all a thrilling process, getting to learn who I am means exploring new things or things I once had interest in but had to leave behind. I get to unapologetically recreate myself into the person I want to be and feel most comfortable as.

 

At times it’s incredibly uncomfortable. I have to face the feelings I’ve suppressed, and the feelings masking has embedded in my heart. I have to deal with the fact I’ve lost time that I could’ve spent being myself and helping others feel better about themselves instead of hiding like I did. I worry about my loved ones not loving the “new” me. I’m becoming unapologetically myself while still having to be aware that masking is a safety mechanism that protects me from the abuse of ableds and NTs so I realise I can still never be myself at all times.

 

I’m creating a new computer system but have to keep the firewall up.

 

The real Renee wants to focus on the small joys this is bringing me so far though. Therefore, I find it worth continuing to unmask. It’s just going to take more time and work than expected.