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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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From:
no subject
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.
From:
no subject
Anyhoo. Rant mode: off.
The smoke alarm I'm referring to is this one (http://www.wom.com.au/product.php?p=88). It does all the things you're talking about, and I have no idea why the price tag. Small number of distributors? Small market so no viability of product if the price comes down? Market stranglehold? I suspect it isn't to do with the actual cost of production, though.
From:
no subject
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.
From:
no subject
I have some frustration around our conversations on this topic, yes, but that's not the same as being offended. Some of my frustration is because I feel like there's some fundamental difference in the way you and I understand disability. We seem to be kind of walking around the crux of that difference and never quite getting it. I suspect that's the nature of communicating over the internet. Times like this I want to be sitting across from you with a coffee and one of those big foam baseball bats... ;)
Some of my frustration is that I think I know what that crux is and I don't know that there's anything either of us can do to change it. My sense is that you believe that the impact of my disability isn't as great as I believe it to be. That's not a point either one of us can argue coherently unless I've been in the shoes of someone without deafblindness and you've stood in mine. We can only have this conversation where we try to understand each other.
I spend a lot of time wondering if I treat my disability as too big a part of myself, if the way I perceive its impact is the reality. Although I know that I can never get actual answers to those questions, I'm a better person for asking them. I don't mean for the way in which I ask those questions to come across as me saying that my life *is* harder than other people's because of my disability. Difficulty in life is such a relative concept.
It's true that my point of reference for difficulty in my life is more often about my disability. That's actually *because* my disability is so recognisable. As you noted, neither I nor others can help but make the distinction.
That doesn't mean I think I'm not able. I know I'm capable. I make a distinction between being a capable person and being a person who is going through hard things. I don't put caveats on saying things are hard because sometimes they Just Are. Doesn't make the world a bad place or me less capable, suffering Just Is.
Should I be able to integrate my disability into the rest of my sense of self? Maybe, but if my head and the world keep reinforcing it as a point of difference - positively or negatively - that's hard to do. Maybe I need to let go of those issues more readily, but by the same token I don't know that that's a process I can force. I'm done with it when I'm done with it.
I'm finally going to stop with the damn navel gazing:
I have no doubt that people with any kind of invisible disability have a really shit time of things too, and that in many ways their lives may be harder than mine. I've seen a little of that through friends with a range of invisible disabilities,including mental illness.
Society is much more accepting of blindness in particular. It's very easy to close your eyes and have a sense of what it might be like. It's not so easy to imagine what it might be like to have a mental illness. It's even less easy to ask the questions about where the lines are drawn between 'sane' and 'mentally ill', and whether those lines are drawn on the basis of an objective reality or a subjective point of reference which is termed 'what the majority seem to perceive'. Fact is, if the majority could suddenly have conversations with a friendly purple goat then we'd be developing medical and social strategies to help those who couldn't.
That's scary shit for most people; of course people with mental illness suffer the consequences of our society's inability to be flexible or to ask itself hard questions. When I say things are hard for me I don't ever, ever dismiss the idea that things are harder for other people. I don't dismiss the idea that I'm able either. I just say that things are hard.
From:
no subject
I also do not compare the ease or hardness of your life with others. As you say, without walking through the life of someone else, you can't tell what their experience is. Even walkin in their shoes is faulty as you would choose differently to me and vice versa based on prior experience and understanding the other does not have.
What I do question is identity.
I am a human being (for the sake of argument). That means that there is a quality called human, and their is the being of me.
Many of us define ourselves as human doings. I am a social worker - no actually, I do social work. I am a worker - no actually, I do work. I am a father - no actually, I do fatherhood. These are things I do, not my being. Being is the begnining of defining my actions and perspectives. Kind of like doing is the clothing I wear, the label I put on. When I take all these off, the being - me - is left. That is me.
Many of us define ourselves based on ability or appearance. I am very intelligent - no I just process quickly or differently to most. I am a brunnette - no, I just happen to have dark hair until it is bleached. I am beautiful - no, I have a shape that is currently popular.
Many of us define ourselves on something closer to the skin, such as illness or disease or disability. I am schizophrenic, diabetic, deaf etc - no, I am a person who has a diagnosis of schizophrenia, a diabetic condition, does not hear as well as the average human. These are characteristics, not definitions. They can describe us, separate us, categorise us. Schizophrenia, diabeties and deafness does not describe our lives, just one small aspect of it. These labels that help other so easily categorise us do no tell people what our seventh birthday was like, what our first kiss was like, what our opinion on Obama is.
I am me. This defines my life. People with some label that happens to match mine do not think the way I do, have not experiences life the way I have, do not react the way I do. They are not me, nor are they the same as each other.
So, I do not identify myself by their labels. I identify myself as me. I am not disabled. I am abled. I survive, live and thrive despite aspects of myself that may be viewed as weaker or different than someone elses. I suffer and hurt despite aspects of myself that may be viewed as stronger or better than others. I am not my weaknesses, I am not my strengths. I am just me.
I emphasised not wishing to offend you because people can become very defensive about the things they take on board about their identity that don't belong. Often because people feel lost without this disabling identification. If I am not what I do, what I look like, what others label me as, what the hell am I? The answer is not a what, it is a who. Yet that too can be very challenging to understand and work out. I know I am still working on it.
From:
no subject
*stirs coffee with big foam baseball bat*
I don't see that by talking about or acknowledging what is a part of my life - one's doing, rather than one's being - I let it overtake or define my essential self. My essential self has the potential to be changed by what I do. Likewise, what I do in life is very much predicated on what my essence is: I am an advocate because my essential self knows that I should try to do good where I can. Not for glory or my own gain, just because I can. It's not a value or a goal I ever consciously decided upon, it Just Is. The things I have done in life mean that it has manifested as disability advocacy. So my doing in this area is reflective of my being, and that is how life should be.
You could argue that the 'being' of a person goes even deeper than those innate values and gravitations towards doing things a certain way. If I think about my essential self, at the very centre of it is quiet and still. It just is. The instincts I'm talking about are kind of a level above that, maybe the bridge between being and doing.
When it comes to my disabililty, I talk about it a lot because I think the way in which I tackle the issues around it needs to be reflective of the core person that I am. You don't 'do' fatherhood or social work without reference to that intermediate part of your being which gives you instincts and preferences. I suspect that you have to think more about how some elements of what you do sit with your being than others.
Most of the time, I don't sense conflict between what I do and what I be. When it comes to my disability, there is some conflict. I believe that my being is strong. Let me be clear: I don't want to be strong, I just kind of know that at a very basic level I am strong. But how to express that strength in 'doing' my disability? Am I stronger as a person who acknowledges the hard bits or who just moves through them? If I acknowledge them, do I treat them as a problem to be solved or do I embrace them as a part of the journey in some way? Can I do both of those things at once and still be strong? That is what this post was about. I just didn't put it quite the same way I'm putting it now.
*offers gentle ear skritches* Am I making sense?
From:
no subject
I like that you keep advocating for what you believe in, that you bring to peoples attention differences in perspective and that you use your strengths and are not a helpless victim of your weaknesses.
You are an inspiration and I thank you for that. Not because you have a disability and continue, but because of who you are.
From:
no subject
I find you, like many of the people in my life, inspirational too. You're one of the people around me who inspires me to keep questioning and examining, exploring and growing. Particularly so because you see things from perspectives which are a little different to most. So thank *you*.