What might be obvious to me may not be obvious to others

 

Trigger warning: The following rant contains references to suicide, suicidal thoughts and abuse.

 

 Please check out my youtube channel for a live performance recording.

 

 

Transcript

 

This is my lived experience. I have a disability, a movement disorder which impacts my mobility and communication. 

My talk will be about my disability affecting how I am perceived and received by others, how this has affected me and how it shouldn’t be the case.  
 
Trigger warning: I talk about suicidal thoughts and discrimination.
 
When Kyla emailed me, I went: Wow! ‘language’, this is so my jam.

Attitudes are so fundamental to our language. In fact, attitudes and language go hand in hand.
 
Language can be there to change people’s attitudes, to gain an understanding of the other. However, our attitudes always colour our interpretation of language. And then our own attitudes can be more intrusive when we encounter a different form of language because we don’t recognise the emotions of the other person.

Society as a whole mostly has a patronising attitude towards people that are perceived as lower than themselves. We do and say things to others who are perceived as lower status beings, that we wouldn’t dream of doing to someone we see as big or bigger or holding as much or more power than ourselves. People with disability are perceived as lower.
 
Most of the time people don’t realise they are being patronising or being patronised. Like when People say: “good girl”.

‘Good’ being an unhelpful binary value judgement and girl being the juvenile form of woman which is condescending when used to refer to an adult. It is the combination of the two words and the act of bestowing it that is supremely patronising. I would say it’s infantilising, only I don’t believe children should be spoken to like that either.

Hard isn’t it. These patronising attitudes are so subconscious. Even I have done it.
 
Also, when you have a disability, the need for language, clear communication and expressing your needs can be so much greater. Like, you can’t simply demonstrate how to do a task because of the fact you need someone to do it for you. Therefore you need more words in order to describe it. And need to describe it again, again and again. And, more importantly, you need to be explaining yourself even more because society as a whole doesn’t have frames of reference to understand our needs or perspectives. 

You have to express your needs and wants so much more when you need other people to support you with doing basic tasks like wiping your bum, let alone the bigger picture stuff of making a life in this world.
 
Yet, when you have a disability and you are perceived as lower status, this inevitably means your words mean less to others and eventually they also mean less to  yourself.
 
This is gaslighting, a form of sometimes unintentional abuse perpetrated by many, where people make you think that the things you say, are not true when they are. Saying things are ok, when they are not, dismissing and minimising your experiences.
 
People with disability are so shut down, locked in, unable to communicate. And our disabilities have largely nothing to do with it.
 
Simply, we do not have the appropriate mental, social, physical or environmental context in which to communicate.
 
Like, I find it very hard or impossible to communicate under certain circumstances.
 
Example. I have composed pages and pages of carefully written notes about how best to support me. For me, that is the easiest way to communicate, as my communication in the moment is quite laborious due to my slow typing speed using one finger and my dyslexia. 
 
By writing things beforehand, I can give people the full dump of information and it’s a lot easier for me to communicate after that because they already know the basics and where I’m coming from.
 
Sometimes, people who should have read all the notes give advice on something they should not give advice on, because I have so carefully written it down already. They don’t take me seriously enough to read my years of experience in me.

People have said I’m obsessing over a problem when I have actually said less words than they have. 
 
And most of the patronising attitudes come out, before I have even typed a word.

People call me ‘she’, in front of me on a daily basis. Talking over me, and about me, without including me. Every way you look at it, it’s deeply wrong. 
 
I have taken to saying ‘no she, please’ when I have it done to me. I call it out when I can. But of course, they think it’s my gender I’m talking about. No, stop referring to me in the third person.
 
I feel I am not there, in the most important way. I’m not there in their minds, and no matter how many times you go, ‘fuck them’ in your head, it is still very dehumanising.
 
Then of course it can go the other way with people goddess worshipping you for doing anything.

The most patronising of all, is being patted on the head. This is also a form of language, a physical language. When people do it to me, I have grabbed them by the hand and pulled them down to my level and patted them back, half the time I would get a violated reaction. Which is fair because it is a violating act, but why isn’t it seen as violating when it’s done to me?

There are too many other examples to say here.
 
Patronising behaviour isn’t fair on anyone, including the ones that are doing it, because they are cutting themselves off from a whole part of reality. A much much more interesting reality.

I think I know where part of this patronising attitude comes from. People fear becoming disabled themselves, and not being able to face their new hypothetical reality. They think: “I would rather have died than be like that”.
 
So we become the walking dead. 
 
They think I must have a screw loose to continue like that. And maybe I do. And what would be wrong with that?
 
Maybe I should have offed myself a long time ago : I had thoughts. I still have thoughts. : But it’s only Society that made me feel this way. It is ableism, with gaslighting thrown in on top.
 
As people, we fear losing our independence, because we see that as losing our value. So it becomes a self fulfilling prophecy. We lose our value because we are seen to have less value and then end up having less options because of our perceived diminished value.
 
I don’t have a good life, because people see me as less, they are not engaging with me and are constantly patronising me. Everything else I can deal with. I don’t see having to ask for help as such a big deal.
 
Or at least I would not if I had the context to use my language in.
 
Loop the loop.
 
We, people with a disability, are less than we could be, because society doesn’t talk to us appropriately, or doesn’t talk to us at all, and that is hugely damaging to a human being. : I am damaged.
 
Patronising attitudes are discrimination, discrimination which hides itself in language. So subconscious, that it is very hard or impossible to bring it forward to someone’s conscious mind and say: “Hey, you’re discriminating against me.
  
Summing up: I have talked about language, how people’s attitudes tie in to it and how these are often negative attitudes, and how these negative attitudes affect me. 

How you can help.
 
Um.

People with disability have been so isolated, that we are still very much working out the language for ourselves. And really we are such a diverse group, that each individual has a different idea about what is appropriate language, which is everyone’s right. But that is up to the individuals, we don’t want others putting us in boxes. 

Like the word carer. I hate it. I prefer to use the term support worker, because I need support, not care. The way others see the word ‘care’ , how it makes them feel about me, even if it’s a little little itty bit, it’s like they are looking after me, like they have power over me and I lose my autonomy. I feel it becomes part of that self fulfilling prophecy. And I feel deep deep down the support workers don’t like it too because they feel responsibility for me, and that isn’t their job.

But, others prefer to use the word carer and that is their right.

All I can suggest: be more conscious of your interactions. Be open, be playful, be respectful. 

Try to be more open about yourself like: Fuck I love Pink. Because when you are open to yourself then you are more open to others.  

Try to learn that it’s okay to be uncomfortable, to not get it right.
 
When you can, try to call discrimination out in a friendly way, have a conversation about it.

I would say give people time to communicate, but I don’t feel it is just about more time, because I have seen people without disability drivel on for ages.

I say try, because no one is perfect. You will fuck up lots. But at least you’ll be trying. I’m still learning too.

Just don’t chase us because that is weird.

Enjoy the rest of your afternoon.