Ask me anything!

You asked and I answered. Here is WHAT you wanted to know, and some things you didn’t. All from the gospel according to a Funny Looking kid!

Note: Some questions were very similar and have been mixed together.  

How do others react to your disability?

It depends who you ask. As a child most of my extended circle refused to acknowledge I even had one (ashamed I presume), and the word ‘disability’ was a forbidden dirty word. My Nonna insisted I was just cursed by the Evil Eye, and performed regular rituals to rid me of it. Until I was old enough to know what she was doing and refused to participate anymore. Much to her displeasure.

Outside of that, I do get stared and laughed at a lot, and I am constantly applauded for doing the most mundane of things like brushing my teeth, which everyone does.

People jump in unbidden and takeover things from me as they assume I want/need their help, even as I am doing them for myself. Its 2023 and only due to my disability, it still is assumed I’m a burden to others even though I live independently, work, and pay my taxes. Funny that no one ever wants to do THAT FOR ME.

The worst THING is when people assume my physical disability means I am intellectually disabled too. I get spoken to like I am a toddler, and often people look straight through me to speak to whoever I am with, even if I have had prior contact. They ask my companion things like “how does she feel,” when I try something on for example. Medical professionals are particularly prone to doing this.

What are the major challenges you face in the community??

Definitely society’s rock bottom low expectations of disabled people.

I think often accessibility is non-existent because people don’t expect “someone like you” to come here/be interested in this/want to be involved.

The other thing is that people assume that if you are out in public, you are public property. I have had strangers take unauthorised photos of or with me, just because they have never seen the like of me before. People also think its ok to touch me without permission.

But the thing that annoys me the most is that without knowing anything about me, people still assume my life is sad and pointless, just because I’m disabled.

What was school like for you?

Generally, school was pretty average, I went to a ‘normal’ school and did pretty much what the other kids did. I was however, the only disabled in the village. I was a middle of the road kind of student the whole way through. In high school I gravitated towards the lower level subjects, and electives I thought I’d ease through, deciding I wasn’t going to try for my TEE very early on. Looking back after many years seeing a Psychologist, I realise that this was just in case I failed and people said “See, told you she couldn’t do it,” or words to that effect.

I WAS VERY KEEN TO PARTICIPATE IN ASSEMBLIES AND THE CHOIR, AND WOULD JOIN ANY CLUB THAT WOULD HAVE ME. I got up the courage to audition for the school’s production of The Sound of Music and was cast as a random Nun. Unfortunately though, after attending all the rehearsals, I broke my leg doing the Macarena (a non-leg related dance), and had to pull out two weeks before opening night.

By today’s standards, I got off lightly with bullies.  When I started school I was a precocious child who used “big words.”  I would never talk, I would converse and instead of an explanation, you’d get my synopsis. A girl with lots of influence disliked this and chastised me so much about it (often recruiting others), I stopped. In high school one boy took an instant dislike to me because of my disability, often using disabled slurs and eventually physical violence. But, I think the biggest bully I had was infact a teacher, who never missed the chance to belittle and humiliate me. They especially loved an audience. I left school with far less self-assurance than I started with.

How do you deal with criticism and/or abuse?

When I was a child, the staring and ridicule made me cry. Then, as I got older, it became frustrating too. Not to mention soul-destroying. I also found it confusing because as mentioned above, I wasn’t allowed to be disabled, yet there was obviously something ‘wrong’ with me that I couldn’t put my finger on and no one properly acknowledged.

Nowadays I can openly acknowledge and embrace my disability, which makes it easier, and I can see the perks that come with it.

It also helps that now I am deaf blind I don’t usually notice it. When I do though I do try and call people out (where possible), or I just store it away for use in a blog. Writing about it is very cathartic. It also acts as a warning to others. The important thing to remember is that you can’t argue with stupid. You can write about them though, they probably won’t read it, and if they do they won’t recognise themselves anyway!

Is there anything your disability stops you from doing that you wish you could do?

There are lots of things I can’t do that I’d like to blame my disability on, like cooking for example. Although I did manage crispy salmon the other day. Unfortunately though, it was meant to be steamed…oops.

I used to be a whiz on the computer, however since going blind in 2009 my abilities are greatly reduced as many of the websites I visit and/or programs I use are not fully accessible with my screen reading software.  

I’d also love to get up and go out on a whim, but excursions of any kind usually require plenty of notice and pre-planning.

Thanks to everyone who posed a question, sorry if I didn’t get to yours. Hopefully, there will be other AMA posts in the future.

 If you’ve got a question you’re itching to ask, please get in touch. Don’t be shy, if I don’t want to answer a particular query, I just won’t.

XOXO