I was going to write all sorts of ranty and/or quasi-intellectual crap in honour of the International Day of People with Disabilities, which is just coming to a close here in Australia. Instead I think I'm going to force myself to say some hard things.
People often tell me they forget that I'm disabled when they meet me in person. I've written in here before about how I never forget, about how my mind gets to do jigsaw puzzles every time I go somewhere new, or how I slot words into even the most slowly paced conversations sometimes because I don't hear them. That's one kind of struggle. I've talked about how sometimes I feel as though people treat me differently in subtle, non-discriminatory ways, even if they're not actually doing so. That's another kind of struggle, though it's brought on by the same problem: I can't get enough information about how other people are treated because I don't see it or hear it as often.
The other kind of struggle I go through is even admitting that I struggle at some things. Right now I have two functioning lightbulbs and two which have blown out. It's not that I can't be bothered fixing them, it's that with my wonky balance and my bad vision I can't do it. I'm in the process of deciding whether it's worth going through the council's home and community care assessments in case I need help with this in future, or if I just fork out for a handyman already and deal with the council later. The mold I just noticed on the roof of the bathroom (same balance issues mean I can't fix that either) is making me lean towards paying for it sooner rather than later. Walking around in the half dark doesn't bother me but the idea that the roof might cave in does.
I struggle to get to sleep at night sometimes. It's not an insomnia problem. I worry about the prospect of a fire or a break in. I live alone, and most of the time I can hear and see enough to get my arse out of danger's way if something happens. At night, I take my implant out and I become profoundly deaf. I take my contact lenses out and I'm legally blind. I can't hear the smoke alarm. I wouldn't see an intruder. This place is fairly safe; the front door has a deadlock and the windows facing out onto the walkway are small enough and high enough that you'd have to be making a concerted effort to get in. I'm on the second floor. These were all considerations when I inspected the place. I still struggle not to worry.
I'm looking into a smoke alarm which sends a wireless signal to a flashing light and a vibrating mechanism, but at $500 just for the alarm - not for the electrician to install it - it's not cheap either. I mean, neither is my life, obviously. There's a lot of irrational fear around this one: I know the agent can't kick me out for being disabled, but will they just decide not to renew the lease next year if they think my disabilities mean too many modifications? I wouldn't be able to prove anything at that point. If you think the human race is better than that, you've never had a taxi driver demand you leave his cab when he sees a guide dog. You've never called a human resources department to find out exactly how much driving is involved in that gig you really want, because hey, your disability means you can't drive, only to be told by the very courteous HR officer that it might be a bit difficult for you to take a job there because they have some pretty steep steps out the front of the building. (I told her that last time I checked, the university where I got my degree was littered with those... and didn't apply for the job).
I know. Past performance is not an indicator of future outcomes. I struggle to see that, too. Most of the time I don't go around with an inbuilt suspicion towards people - curiousity and analysis, perhaps, but not suspicion. Given that I'm not even aware of people nearby sometimes, I wouldn't go anywhere if I was suspicious. Housing and employment issues just tend to make me a bit more circumspect.
Even in environments where people are more than willing to be accommodating I struggle to remember that they're there to help. Sometimes it's because I don't know what they can do better: doing a Master's degree where most of the classes are based on a large group of people sitting in a big circle talking to each other quickly... that's not ever going to work perfectly. Do I focus my energy on getting the classes to the most optimal state or do I get my information through reading instead?
In other instances I struggle because I don't want to rock the boat or make life harder for others. My workmates are all stressed and overloaded. If one of them forgets to announce their presence at my desk by tapping me on the shoulder - thereby scaring the crap out of me - I might have a gentle word with them later, but I won't always reinforce it straight away.
Writing this is hard. It's hard for me to say things are hard, even when they're not disability related. I think there's a lot of cognitive dissonance around the disability difficulties though. I was raised to be as independent as possible. Somewhere along the line I picked up that being 'indpendent' meant 'assimilating'. Not asking questions, not showing my fear or my anger or my sadness. I bought into the idea of the brave crip, I guess.
Another part of this is that in most other ways, I am an independent human being. I'm passably bright. I have all the trappings of a 'normal' life: a job, a place of my own, study, friends. How can I be so capable in these areas and yet struggle with such basic things? I'm only just realising that some part of my very deepest lizard brain thinks it's a personal failing not at all to do with my vision and hearing loss. That I *should* be able to do everything easily. Or at least give the appearance of doing so.
Huh.
When I started out writing this I wasn't sure how it would connect back to the International Day theme of dignity and justice for all of us. Now I do. I'm an advocate and I write about the struggles associated with disability every day. Some of it is drawn from my own personal experience but all of it is abstract. Today I'm reminding myself that the only way any of us gets real dignity and justice is if we speak about the reality of our lives. The hard bits, the embarassing bits, the scary bits. Not in the abstract, but really owning it. No law will do enough to give us dignity and justice if we don't speak about our need for it from ourselves as well as others.
People often tell me they forget that I'm disabled when they meet me in person. I've written in here before about how I never forget, about how my mind gets to do jigsaw puzzles every time I go somewhere new, or how I slot words into even the most slowly paced conversations sometimes because I don't hear them. That's one kind of struggle. I've talked about how sometimes I feel as though people treat me differently in subtle, non-discriminatory ways, even if they're not actually doing so. That's another kind of struggle, though it's brought on by the same problem: I can't get enough information about how other people are treated because I don't see it or hear it as often.
The other kind of struggle I go through is even admitting that I struggle at some things. Right now I have two functioning lightbulbs and two which have blown out. It's not that I can't be bothered fixing them, it's that with my wonky balance and my bad vision I can't do it. I'm in the process of deciding whether it's worth going through the council's home and community care assessments in case I need help with this in future, or if I just fork out for a handyman already and deal with the council later. The mold I just noticed on the roof of the bathroom (same balance issues mean I can't fix that either) is making me lean towards paying for it sooner rather than later. Walking around in the half dark doesn't bother me but the idea that the roof might cave in does.
I struggle to get to sleep at night sometimes. It's not an insomnia problem. I worry about the prospect of a fire or a break in. I live alone, and most of the time I can hear and see enough to get my arse out of danger's way if something happens. At night, I take my implant out and I become profoundly deaf. I take my contact lenses out and I'm legally blind. I can't hear the smoke alarm. I wouldn't see an intruder. This place is fairly safe; the front door has a deadlock and the windows facing out onto the walkway are small enough and high enough that you'd have to be making a concerted effort to get in. I'm on the second floor. These were all considerations when I inspected the place. I still struggle not to worry.
I'm looking into a smoke alarm which sends a wireless signal to a flashing light and a vibrating mechanism, but at $500 just for the alarm - not for the electrician to install it - it's not cheap either. I mean, neither is my life, obviously. There's a lot of irrational fear around this one: I know the agent can't kick me out for being disabled, but will they just decide not to renew the lease next year if they think my disabilities mean too many modifications? I wouldn't be able to prove anything at that point. If you think the human race is better than that, you've never had a taxi driver demand you leave his cab when he sees a guide dog. You've never called a human resources department to find out exactly how much driving is involved in that gig you really want, because hey, your disability means you can't drive, only to be told by the very courteous HR officer that it might be a bit difficult for you to take a job there because they have some pretty steep steps out the front of the building. (I told her that last time I checked, the university where I got my degree was littered with those... and didn't apply for the job).
I know. Past performance is not an indicator of future outcomes. I struggle to see that, too. Most of the time I don't go around with an inbuilt suspicion towards people - curiousity and analysis, perhaps, but not suspicion. Given that I'm not even aware of people nearby sometimes, I wouldn't go anywhere if I was suspicious. Housing and employment issues just tend to make me a bit more circumspect.
Even in environments where people are more than willing to be accommodating I struggle to remember that they're there to help. Sometimes it's because I don't know what they can do better: doing a Master's degree where most of the classes are based on a large group of people sitting in a big circle talking to each other quickly... that's not ever going to work perfectly. Do I focus my energy on getting the classes to the most optimal state or do I get my information through reading instead?
In other instances I struggle because I don't want to rock the boat or make life harder for others. My workmates are all stressed and overloaded. If one of them forgets to announce their presence at my desk by tapping me on the shoulder - thereby scaring the crap out of me - I might have a gentle word with them later, but I won't always reinforce it straight away.
Writing this is hard. It's hard for me to say things are hard, even when they're not disability related. I think there's a lot of cognitive dissonance around the disability difficulties though. I was raised to be as independent as possible. Somewhere along the line I picked up that being 'indpendent' meant 'assimilating'. Not asking questions, not showing my fear or my anger or my sadness. I bought into the idea of the brave crip, I guess.
Another part of this is that in most other ways, I am an independent human being. I'm passably bright. I have all the trappings of a 'normal' life: a job, a place of my own, study, friends. How can I be so capable in these areas and yet struggle with such basic things? I'm only just realising that some part of my very deepest lizard brain thinks it's a personal failing not at all to do with my vision and hearing loss. That I *should* be able to do everything easily. Or at least give the appearance of doing so.
Huh.
When I started out writing this I wasn't sure how it would connect back to the International Day theme of dignity and justice for all of us. Now I do. I'm an advocate and I write about the struggles associated with disability every day. Some of it is drawn from my own personal experience but all of it is abstract. Today I'm reminding myself that the only way any of us gets real dignity and justice is if we speak about the reality of our lives. The hard bits, the embarassing bits, the scary bits. Not in the abstract, but really owning it. No law will do enough to give us dignity and justice if we don't speak about our need for it from ourselves as well as others.
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smoke alarm. tell me more. this sounds like a market that needs filling. I'm thinking a smoke alarm that triggers not just the noise alarm, but a flashing light too, or a siren in another room. This is very feasible and not particularly expensive or technically difficult. $500 is seriously over priced. $100 is much more reasonable, and that would be for a one off, not a production run.
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You are not disabled. You are enabled. Your most obvious flaws are very obvious. This means you can easily site them when you have a difficulty even if your pride won't let you. By the same token, people generally go out of their way to help you even if you don't want it.
Mental illness is another form of 'disability' or flaw. It is not possible to see it. People do not go out of their way to help. Often people abandon you because of it. "Just go to centrelink and fill out a form!", well, I can't leave the house, you know. "Just make friends and you'll be fine", I fear letting anyone close to me because they will just hurt me and I can't understand what they feel. "Get a job", when I work, I don't stop until I am in hospital. This is hard to see, hard to measure and people always think you have failed.
Yet these people can learn ways to live their life. They can overcome their disabilities and become able.
Much like you. Yes, you have some weaknesses that are easy to spot, easy to measure, that have known methods of overcoming. So you live your life, you deal with your weakness, you are very able.
And like all people you have problems with some things that are not related to your 'condition', which you and others can't help but pathologise back to your 'condition' as if that was you, which it isn't. It is only a part of you.
You are not disabled. You are Crypticgirl, part of which includes vision and hearing difficulties, but is not limited to these difficulties.
Again, I mean no offense. I just wish my weaknesses were so easy to point out to others and get help with, while at the same time fearing being so easy to spot and label.
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