Sunday, December 30, 2007
How do you keep going when you see more and more people like you abused, murdered, tortured, neglected, abandoned, and the world turns its back?
For Katie, Katie, Ashley, those who came before, those of us who are here now, and those who will come after
When you will not hear my pain
You cannot share my joy
When you will not acknowledge my hate
You cannot feel my love
When you will not allow my weakness
You cannot be supported by my strength
When you will not accept my difference
You cannot appreciate my beauty
When you will not hear me
That doesn’t mean I have nothing to say
When you do not value me
That does not mean I am not valuable
When you will not see me
That does not mean I don’t exist
Copyright Me, sometime prior to 2001, with lines added today.
Monday, December 10, 2007
And I thought I had problems with social contact... :-/
Monday, December 3, 2007
I have written a number of posts on this blog about my family and how they treated me as a child, a teenager, a young woman. I have given presentations to various groups in real life on what I went through. I have worked on commitees and contributed to resources about domestic violence and people with disabilities. I live independently and have as much control over my day to day life as anyone in my situation can. I escaped. I got out. But I still struggle with the loneliness, isolation, and betrayal as a result of a family and a community that saw me as less valuable and less worthy of love and support because of who and what I was. The effects of child abuse and domestic violence are long lasting, and affect who we become and what we contribute to the world. Some of us lose the fight to survive, and many of us live on the edge every day, fearing that one day it will become too much and we will also no longer be able to hold on. I struggle daily to keep going in a world that reinforces and perpetuates the violence and neglect that I suffered at the hands of my family.
It should never have been like this. But it is. And some days it is just too hard. Many of us will never have the life we deserve. It is long past time for the world to stand up and say, No, no more. All women should be safe and valued, no matter our race, ability, orientation, class or age.
Please click through to The Carnival Of 16 Days Of Activism Against Gender Violence for more posts on gender violence
Tuesday, October 9, 2007
Monday, October 8, 2007
Doctors are preparing to remove the womb of a disabled teenager because her mother fears she will not cope with the complications of adulthood.
Keep my daughter a child, pleads mother
"Every year Alison Thorpe sees her daughter’s life getting tougher. A victim of severe cerebral palsy, the 15-year-old is too big for pastimes that used to bring her joy."
OK. For those who don’t know. I am a woman with cerebral palsy. Many of the women with disabilities I have known in my life have also got cerebral palsy, ranging from mild to severe forms.
In view of this, I feel I *am* qualified to comment, despite what the parents of this girl, and of Ashley X, would like to think. Many of the activists fighting against this invasion of bodily integrity are women with disabilities, and/or people with CP. We live with the realities of disability every single day of our lives. We do know what we are talking about. There are other options. These families act like they are the first to ever deal with children with disabilities growing older. Bullshit. Thousands of families have been there before, and have not resorted to such drastic measures. They have found ways of coping. And if they are not coping, they need to be given support. Funding for assistance, for workshops on menstruation management for caregivers, noninvasive medical alternatives.
Women with disabilities, including those women with severe forms of disabilities have the right to whole bodies, bodies that are not carved into for no medical reason other than to make life convenient for caregivers, or to spare people from the awareness that PWD do grow up, and become adults.
There is also a very disturbing assumption made about the female body, that it is undignified and messy, that menstruation is something to be ashamed of. This is evident in the way society relates to female bodies in general, and then when you add the revulsion - and it is revulsion, I have lived all my life seeing the disgust in people's faces when they look at me because I have CP - society feels when confronted by severe and/or visible disability.
Oh, and just for the record - reducing someone’s external sex characteristics (ie amputating both breasts, as happened to Ashley X), does not, and never will reduce the risk of sexual abuse. For gods sake, babies, infants, toddlers, pre-pubescent children of both sexes, ablebodied and disabled, are abused in horrifying numbers. Mutilating someone’s body is never the answer - especially when it would never be countenanced for ablebodied children.
And by the way, there is no such thing as a ‘victim’ of cerebral palsy. It is not some horrible spectre deliberately stalking people. It’s just there. It’s not the worst thing in the world - more than a few aspects of it can be difficult, depending on circumstances, but practical and emotional support, and being treated with dignity and respect, can go a long way towards living a good life. And needing assistance with toileting and other personal care tasks is not inherently undignified or degrading - unless people around you behave like it is.
Parents, please remember - there are others who have gone before you, there are people with disabilities who have lived the reality of what your child is living, there are families who have brought up children with disabilities through to adulthood, seek them out, seek us out, listen to what we have to say about what has made our lives easier and what hasn't, what really constitutes dignity. There are alternatives to these mutilations.
And for those who think that people with severe disabilities - including those with cognitive disabilities - cannot have consenting sexual relationships, please read this story.
“A pioneering policy is breaking an old taboo by encouraging disabled teenagers to form sexual relationships, with help from carers if necessary”
“Jan Symes remembered every detail of the scene. A 17-year-old girl with straight brown hair pulled back into a ponytail, heavy purple boots and clothes ill-suited for her age sat opposite her in a small office at Treloar’s College, near Alton in Hampshire.
The teenager had cerebral palsy and was sitting in a wheelchair, using a machine to speak. She lifted her head, looked across at Jan and asked: ‘Do you think it is all right for me, as a very disabled person, to fancy someone?’ Symes was horrified. ‘Will society think it is disgusting?’ the girl went on.
Today the college for physically disabled teenagers over 16 goes public about a ground-breaking ‘sexuality policy’ that began to take shape that day two years ago, when a young woman shocked her counsellor by asking whether she had the right to fall in love.
A policy was designed that aimed to break down one of society’s most enduring taboos: that of disability and sex. And now, for the first time, staff are ready to speak out about the controversy, legal wrangling and heated debates involved in producing a three-page document that fundamentally changed the ethos of the college. Students, it stated, not only had the right to pursue sexual relationships, but would be assisted physically and emotionally by specially trained staff.
Now other colleges for the disabled are looking to make a similar change. Like Treloar’s, they have young people whose disabilities are so severe that even to hold hands, cuddle or kiss is impossible without help.”
Sunday, September 30, 2007
- I love musicals and musical theatre from all eras and want to be reincarnated as either Cyd Charisse or Ann Miller.
- Before I was diagnosed with Cerebral Palsy at age 2 the doctors thought I might have Brittle Bone Syndrome. In nearly 30 years of wobbly walking and constant falling over and knocking into things I've only ever broken two bones - my tail-bone (yes, I blanked on how to spell the technical term!) at age 18 and the small bones in the back of one hand in my late 20's/early 30's - I'm still at a loss to figure out how anyone even thought of BBS.
- I'm scared of the dark - even now at age 33.
- I am TERRIFIED of being buried alive.
- A distant ancestor on my father's side of the family was a Lady-In-Waiting to Mary, Queen of Scots.
- When I was younger, I used to have an imaginary friend that was a flea named Esmeralda.
- According to my GP, I have `petite' ear canals.
- I luuuuurve stationery and stationery stores. I could browse in them for hours!
Tuesday, September 25, 2007
Violence against any woman is unacceptable. Sadly, the more disenfranchised by society a women is (by race, ability, class, income, sexual identity, age, etc) the more likely they are to be abused and mistreated.
This must stop.
We all have a responsibility to do what we can.
I'm usually more eloquent about this topic, but I spent an hour and a half on the phone today with my best friend. She is being seriously verbally and emotionally abused by her partner, who has also been physically violent - not to her, yet, but has broken furniture and belongings. She has started to realise that she needs to get out, but she is in a foreign country where she doesn't speak the language too well. I know she'll get out, but it's so hard watching someone you love go through this. I'm exhausted. There is so much I should mention here, the violence and abuse Aboriginal women in Australia are subjected to, the continuing silence and denial of the reality of violence against women with disabilities, the way things are so much harder for women who are marginalised on more than on count..., etc, etc. And I will talk about these things and link to those who know more about certain issues than I do, just not tonight.
Until I get back to this, please have a look at the links on the sidebar, there are many others writing about these issues. Read and absorb what they have to say. And don't stay silent on violence and abuse.
Sunday, August 19, 2007
It's been a busy few months, stabilising my mood, having a holiday with a lot of much needed rest, and finally finding my way out of a particularly horrific two year depression. I've been revelling in the fact that I can read properly again. One of the worst symptoms of depression for me is a complete inability to read, as reading=breathing for me, it really does my head in. But now I'm back to what laughingly passes for `normal' in my world. All of my recent CP-related phyiscal problems seem to have eased off as well. Yippee!!
Living with disability/ies is certainly a full-time job!
So I do intend to start posting here again very soon - I have links to new resources to share, rants to `rite', and at least one fun meme to do.
Sunday, June 10, 2007
This was a speech made by Pulitzer Prize-winning author, Anna Quindlen at the graduation ceremony of at American university where she was awarded an Honorary PhD.
you've received your test results and they're not so good.
Sunday, May 20, 2007
The following is a post that the Ranter wrote at her blog, Disability Rants, a couple of months ago, and I thought it was so good and so important that I asked her if I could post the whole thing here. I can only add a resounding, "hell, yes" to all of her points. Please go and visit her blog as well, she has some fantastic posts.
"Disability Dos and Don'ts
1. Ask us what's wrong with us.
2. Ask us what happened to us.
3. Ask us how we do what we do.
4. Tell us we're awesome for doing the ordinary.
5. Think we're awesome for doing the ordinary.
6. Assume anything.
7. EVER try to freakin' push us before asking if we need help.
8. EVER try to freakin' push us after asking if we need help and we say no.
9. Swear at us when we get pissed off when you don't respect our answer, decision, space (pushing us without asking is as invasive as me going up to you and taking your briefcase out of your hand without asking when you don't know me from Bob).
9. Rush ahead to open doors for us.
10. Apologize for not having helped us in time when it seems we're doing just fine without you.
11. Say stupid things like "I should be doing that for you" when we reach the door first and hold it open for you.
12. EVER pat us on the freakin' head!
13. Ask us what disability we have before getting to know us.
14. Ask us anything disability related before getting to know us "just because you're curious". Who the hell are you, and how important do you think your curiousity is, freak?
15. Ask us if we play basketball.
16. Try to give us money (unless it's a cheque with 6 digits).
17. Tell us how freakin' brave we are unless we just fought a bear.
18. Address our companions when asking questions meant for us.
19. Ask "are you sure?" when we tell you we don't need help.
20. Ask "do you want to go out" if we happen to be sitting by a door.
21. Assume we like to listen to your problems coz we'll "understand" since obviously our lives have been hard like yours, right?
22. Assume that a physical, visual, auditory disability, speech impediment, or other means we couldn't possibly hold a Masters degree, good paying job, own a condo, drive a car, marry, have children, make decisions for ourselves.
23. Shout at us.
1. Use your freakin' common sense.
2. Talk to us.
3. Get to know us.
5. Establish some sort of relationship before you ask us anything personal.
6. Allow us to be as independent as we can be.
7. Wait for us to ask for help.
9. Let us open the door for you if we reach it first.
10. Give us a chance before you come barging in to "rescue us".
11. Think twice before you open your mouth.
12. Ask us out for coffee.
13. See us as human beings.
14. See us as women or men.
15. Consider us as wives, husbands, partners, friends, lovers, intellectual equals
18. Be open.
19. Remember that we have to deal with people like you every hour of every day."
The Ranter also added a few more in the comments:
24. Don't tell us we're going to get a speeding ticket.
25. Don't tell us we're good drivers.
26. Don't tell us how well we manage our wheelchairs.
27. Don't lean on our wheelchairs.
Sunday, April 22, 2007
Wednesday, March 14, 2007
Feminism is meaningless if it doesn’t include *all* women and the issues that affect them. Just because some people don’t want to admit the existence and relevance of intersectionality in many women’s lives, that doesn’t mean that it doesn’t exist.
I can give many examples of the way sexism and ablism intersect in my own life and the lives of women with disabilities I know personally, the following are a very small sample.
The woman with Cerebral Palsy whose husband was violently abusing her and whose speech impediment meant that on the night he attempted to kill her that she wouldn’t have gotten prompt police assistance if the person on the other end hadn’t already spoken to her on other calls and realised that she wasn’t drunk, stoned or kids making prank calls. Her husband abused her physically, sexually, financially, and emotionally for years and when she tried to tell people about it, their response was, “but you’ve got a disability, he wouldn’t treat you like that”. And the custody case for their kids, where he tried to paint her as an unfit mother because of her disability. I have heard dozens of those stories, just change the disability of the woman involved and the partnership status.
A women with Muscular Dystrophy who was told by doctors that she couldn’t have children and when she and her husband tried to adopt was they couldn’t, because she’s in a wheelchair. Never mind that women in wheelchairs and with other disabilities all over the world have been successfully parenting children for years. They did eventually get pregnant, and she had to put up with personal questions and remarks from complete strangers about how she got pregnant and whether she *should* be pregnant. Again, not an uncommon story in the lives of women with disabilities
Me, at 13, whose ‘mother’ had some bee in her bonnet about the fact that I didn’t get my period on the dot of turning 13, and assumed that because I was born prematurely and had a developmental disability that this would affect the timing of my period, had me up on the local doctor’s exam table with this doctor’s hand between my legs giving me an internal examination. Neither of them told me what he was going to do, or why (no medical reason for this by the way - wildly inappropriate and unprofessional on his part - was told by female medics and women’s health nurses many years later that this was totally unwarranted). Invasive and unecessary gender related medical abuse. Not at all uncommon for women with disabilities, and my experience is one of the mild ones. There are women who’ve been sterilised, who’ve had forced abortions, had their children taken from them, all without their knowledge or informed consent and all because of society’s prejudice about women with disabilities.
And do I even need to mention women and mental health issues and the genderbased violence, neglect and dismissal of women as a result?? No, thankfully, for the sake of my overworked fingers, I don't have to, right now. The Goldfish has an excellent post up about women, sexism and mental illness that fits the bill nicely.
From the Women With Disabilities Australia website - the peak body for women with disabilities in Australia (and we have much better health and welfare policies here in Australia than the US does, based on what I hear and read from US women with disabilities):
“Women with disabilities are, from the government record, one of the most marginalised and disadvantaged groups in Australia. Analysis of data available from a variety of sources, gives us the following information about women with disabilities in Australia (Frohmader 2002).
* Women with disabilities are less likely than their male counterparts to receive a senior secondary and/or tertiary education. Only 16% of all women with disabilities are likely to have any secondary education compared to 28% of men with disabilities.
* Women with disabilities earn less than their male counterparts. 51% of women with a disability earn less than $200 per week compared to 36% of men with a disability.
* Only 16% of women with a disability earn over $400 per week, compared to 33% of men with a disability.
* Women with disabilities are less likely to be in paid work than other women, men with disabilities or the population as a whole. In fact, men with disabilities are twice as likely to be in paid employment as women with disabilities.
* The percentage of women with disabilities being assisted by Government funded open employment services continue to decline. Open employment and disability employment services assist twice as many men with disabilities as women with disabilities.
* Women with disabilities’ participation rates in the labour market are lower than men with disabilities’ participation rates across all disability levels and types.
* Women with disabilities are substantially over-represented in public housing, comprising over 40% of all persons in Australia aged 15-64 in this form of tenure. Women with disabilities are less likely to own their own houses than their male counterparts.
Low levels of education relegate women with disabilities to lower eschelons of society, limit their access to information and their ability to interpret it, limit their life choices and limit their ability to achieve financial and living independence.”
“Overseas studies have found that women with disabilities, regardless of age, race, ethnicity, sexual orientation or class are assaulted, raped and abused at a rate of at least two times greater than non-disabled women (Sobsey, 1988, 1994; Cusitar,1994; Stimpson and Best,1991; DAWN 1988).
Sobsey (1988) suggests that 83% of women with disabilities will be sexually assaulted in their lifetime. A qualitative study by Nosek, found approximately one third of women with physical disability had experienced sexual abuse at some stage in their life (Nosek, 1996). Similarly, in Doucette’s study of Canadian women with disabilities, 40% experienced abuse and 12% had been raped (Nosek, 1996).
There are relatively few studies into the incidence of physical violence and rates vary widely. A study for the Canadian Ministry of Community and Social Services in Toronto found 33% of women with disabilities were assaulted mostly by their husbands compared with 22% of non-disabled women (Nosek, 1996). Feuestein estimates that upward of 85% of women with disabilities are victims of domestic violence in comparison with 25% to 50 % of the general population (cited in Waxman, 1991).”
Full article and cites at http://www.wwda.org.au/odds.htm
And if any of this sounds angry, yeah, I’m angry, I’m fucking furious. I’m furious that I constantly have to fight to be seen as more than just a ‘disability’, a ‘pity or charity case’. I’m sick of my very existence being put at risk, at my sanity being jepordised by having to live in a world where I am told - literally as well as figuratively, that other people, other women tell me that they think my life is meaningless, is a life that they would rather be dead than have to live, (and I have been accosted by people, women and men, in person to be told this), is something that they don’t want to concern themselves with.
I am a woman. I am a feminist. And my concerns do not fragment the movement. The inability of ablebodied women to acknowledge that my issues are also feminism’s issues fragments the movement.
My concerns belong in feminism, as do the concerns of all other women with disabilities. It is to your benefit, not just ours, that this is the case. Just because you’re not disabled now doesn’t mean that won’t change in the future, and certain concrete results of sexism - chronic illnesses resulting from poverty and poor health care, domestic violence - cause many disabilities in women.
Saturday, February 10, 2007
"A sadistic couple who 'tortured' their disabled toddler during a horrific campaign of sustained abuse just weeks after social services returned the youngster to them were caged for a total of 22 years. [...] When the child, who cannot be named, was taken in by foster carers they referred to her as a "sunny child" who was physically capable despite her disability.
Following the abuse she was left physically incapable of walking."
Just something else to echo in my brain when I have to listen to some dipshit tell me that "No one would ever hurt a child with a disability", or, "But their (your) parents must love them (you)". Denial like that enables horrors like this to happen. It's ironic, or just fucking infuriating, when you think about it. Able-bodied people are automatically assumed as being capable of good parenting, and the saccarhine crap that gets spouted about how `amazing' they are if they do have a child with a disability is endless, even if there is evidence to the contrary. But have a disability and have a child and you're automatically assumed to be incompetent in a parenting role, often with no evidence of incompetence. I've heard story upon story from other women with disabilities I know who've been questioned and attacked for having children, simply because people won't get past their prejudices about what people with disabilities should or shouldn't do.
It is some very small comfort to notice that nobody who is commenting on the story has so far trotted out the usual justification of abuse that many stories about the abuse and/or murder of people with disabilities get. The one where the supposed difficulty of having or taking care of a child with a disability justifies the murder or abuse. That was one I heard personally applied to my own story, too many times told, "But you don't understand, it's so difficult to have a child with a disability."
Meanwhile, the difficulty of actually being subjected to abuse is something that they will not acknowledge. Believe me, there is nothing in the world that is harder than living with the knowledge that your own parents abused you, that they didn't see you as human or worth protecting. The little girl in that story will go through hell dealing with the afteraffects of what was done to her. Living with cerebral palsy is a walk in the park, in comparison.
Sunday, February 4, 2007
In the absence of any real writing from me lately, I'd like to point you toward two of my favourite new blogs, Chewing The Fat - gloriously well-written meditations and stories about disability, and Women of Colour Blog, passionate, committed and thoughtful writing about race, women, feminism, and poverty and many more topics. It is one of the few `mainstream' blogs out there that gives time and space to disability issues in a respectful and mature manner.
I seem to have lost the ability to write about anything in a coherent manner at the moment. It's very ironic that this has happened at a time when I have more opportunities to express myself. Some sort of subconscious self-censoring and silencing thing. I'm pulling back from the world more and more these days. It's not a bad thing, and I'm happy to see so many people who are able to write brilliantly and eloquently about issues that are important to me.
Sunday, January 14, 2007
"Independence" is a myth.
People who say they love someone aren't always telling the truth.
The world is not a just place.
There are always people who will justify terrible injustices if it helps them keep their illusions.
No one is beyond scrutiny.
Friday, January 12, 2007
The difficulty is knowing where to start, what to tell, what not to tell. The difficulty is knowing whether or not to tell at all. The moral responsibility I feel that makes me want to lay it all in front of the world, the pressure to tell what cannot be told, what cannot be heard, what cannot be borne continually nudges at me. But I want to forget what I know, hide it, avoid it.
And so I vacillate, bouncing back and forward nervously on my courage, trying to convince myself that it’s safer, better this way, that I’ll save myself the terror of disbelief. But I am pricked by something inside me that instinctively wants to regurgitate what I know, consequences and cowardice be damned. But where to start. If I think too long I know I’ll never start. So I stop thinking and just jump in. And start with feeling.
The feeling of fingers on flesh. The harshness of the distant clinical touch, the reciprocal revulsion. But that’s no start. It’s too distant, you have no idea what I’m talking about, do you? And so cowardice wins. This round at least. So try again.
The insistent hum of the fluorescent lights. The sharp shock to the retinas of the reflected glow off the white clinical walls, the terrified isolation. And that doesn’t work, either. The difficulty is obvious, I’m sure you’ve picked out the flaw already. And cowardice, or its better dressed sister, self preservation, wins this round too. We’ll try again, shall we?
A child stands in the middle of a room. She wears a white gown. She is surrounded by men - well, mostly men, who are also wearing white. They stare, and discuss, and scribble on pads of white paper. The child is staring too, but she is not talking, and can write nothing down. She is almost naked under the gown, wearing nothing but green cotton underpants with white spots. She stands with an unfamiliar rigidity, her body stiff, fear layered on a everyday tension. She tilts to one side slightly and there is less natural movement in that side. She stares, but she is not looking at the men, her gaze is fixed on a spot past their heads. And unlike the men in the room, her face does not hold a confident arrogance that can simultaneously take, assess, and discard its object without a second thought, it is a blind stare that turns in on itself and has no object but escape. The men talk amongst themselves, ask endless questions that are addressed to, and answered by each other, even though the child is the subject of the clinical inquisition.
Every now and then she is ordered to walk up and down the room and they throw around disconnected words and phrases like, ‘spastic movements’, ‘unnatural gait’, ‘inflexibility’. Or one of the white-coats leaves his seat to lift the child’s arms away from her body and hold them in midair for what seems like hours. Or another will ---
But no, this way doesn’t work either, it’s boring, easily ignored. We’ll go down another path. How about this?
You stand in the middle of the consulting room. The cold air from the air-conditioning lifts goose-bumps from your exposed flesh. It feels like you have been standing for hours, your left leg is starting to weaken, to wobble slightly, and it takes every bit of self control you have to keep standing up straight. The doctors stare at you, and talk about you using words you don’t understand. They call you ‘the patient’, and look through you coldly, scientifically. Although you don’t know exactly what they are saying, you know they are picking out all things about you that are wrong, that don’t work as they should. Every time one of them looks at you, they find another thing wrong.
You stand there, shivering, and you can feel yourself becoming nothing more than a collection of broken parts, legs and arms and a brain, damaged and defective. You stand there until you can’t even remember your name, or how old you are, or anything else about yourself, other than what is wrong with you. The room seems to get bigger and bigger, and the empty space around you is endless and unforgiving.
From a great distance the piercing eyes of the doctors continue staring at you, and look right through you. You can feel a series of glass shells surround you, one for every person in the room. They slide around you, one by one, slowly, smoothly, without making a sound. And at the point where the indifferent gaze of each of your observers becomes too much, you can hear a metallic twist and click, like the key in a lock, shutting you off from the world. Until at last, you are surrounded by a dozen of these glass shells. And inside the shells, deep inside yourself, you feel another empty space open up, black and cold. A space filled with the almost unbearable pain of forever being looked at, but never being seen, of always being observed, but never being known. But you will try and pretend for many years that the space does not exist, until the terror of it will cause you to spend a night trying vainly to fill the space with handfuls of little pea-green pills. But this will not work, and you will spend the rest of that night crouched over a bucket painfully vomiting into it the pills, and ---
And definitely not. I am undecided as to whether or not that works, but I have no doubt that it is possibly too painful, too manipulative of my audience, perhaps too unforgivably gratuitous. So I will try out my third and final option.
Mending the flaw in this whole drama, there needs to be an ‘I’, there is a ‘she’ and a ‘you’, but there is no ‘I’. You have been expecting it, I know. But that’s all I know. I don’t know how to put myself into this, I don’t want to put myself into this. I can’t. There is no ‘I’ here, there cannot be. I do not exist, I do not feel, I do not breathe. I am not here, I cannot breathe, I cannot feel, I cannot exist. I am invisible.
Wednesday, January 10, 2007
I haven't written about Ashley yet, aside from the occasional comment on other posts. I don't know if I can. Ashley's parents remind me so much of my own parents, and that's not a good thing.
Tuesday, January 9, 2007
People with disabilities are the only severely discriminated against and oppressed group that anyone in the world, no matter what their age, sex, race or income level, can be dropped into at any point and time without warning. So however the able-bodied community react to and treat us will inevitably rebound on them.
Living with a disability can be many things to those of us who are directly affected by it. It can be, and often is; painful, frustrating, annoying, exhausting, frightening, irritating, time consuming, costly, isolating, permanent and much more. But one thing we almost never find it to be is tragic.
Those of us with disabilities rarely refer to our disability or ourselves as tragic. Tragedy is a label foisted upon us by people who have no idea of what our lives are really like, and who don’t particularly want to know. They think our lives are so dreadful and we must all wish ourselves dead, because they do not want to deal with our reality and existence, and wish us dead to save themselves the trouble. And we cannot defend ourselves or explain ourselves because tragedies aren’t supposed to make any noise or argue; they must be silent, blank, still and ideally, dead.
I believe that the real tragedy for people with disabilities is society’s inability to cope with them. It is the neglect and abuse of us. It is the systematic denial of our needs, wants and desires. The denial of the fact that we are not solely and totally our disabilities, that we might have souls and spirits and hearts and dreams, and passions and loves and hates, also. The denial of what we can give to others – both because of and regardless of our disabilities. Their denial of our capacity for love and support, our ability to help and care for those around us in as many different ways as are open to able-bodied people.
Ultimately, society tries to, and tragically often succeeds in denying our humanity, our right to live full lives, our very existence.
The body has been used for centuries as a metaphor for internal states of mind, beliefs and feelings. With literature and movies such as "Phantom of the Opera", "The Hunchback of Notre Dame", "The Tempest" and "Peter Pan", along with many others, the physical deformities of a character are used to indicate evidence of personality defects. Unfortunately people often forget that this is nothing more than a literary device, and it is not a true and accurate reflection of real life.
Being disabled is not seen as a real valid experience of life, but solely as a metaphor. A metaphor for weakness, a metaphor for eternal childishness, a metaphor for evil and depravity, but not as a real space in which to exist.
If you are disabled, you are only accepted if you martyr yourself on the altar of the world’s perfectionism. If you kill yourself, striving to overcome their prejudices. A dead, inspirational cripple is always much more acceptable than a cripple who lives by her own rules.
It is very easy for most people to look at the marginalisation and isolation of people with disabilities, and explain it away by seeing it as a natural result of having a disability. In this way, society shifts the burden of change onto people with disabilities themselves, and can avoid seeing the very real social conditions that cause our oppression.
The human body is not infallible, that is inherent in our existence. Illness, pain and death come to all of us, therefore we must learn to accept it – in others and in ourselves, or in denying it risk destroying ourselves totally in the process. When we strip away the glittering surfaces of our outsides, of our facades that we struggle to make so perfect. When we strip all that away, all we see, and all we have left is imperfect, flawed. What makes us human are our flaws and our imperfections, our disabilities, and we are no less human for them. That is what makes us human, nothing more and nothing less.
We need to change society’s abhorrence of the imperfect body, which results in an expectation of perfection and perpetual youth. Society does not seem to realise the dangers of focussing on the external as opposed to the internal; and a fixed point in time as opposed to growth, evolution and development; and our insistence on not accepting and intergrating death and disability into our lives. This naïve thinking results in the marginalisation of those of us who cannot or will not conform to these expectations, and creates a slowly decreasing noose that pulls in those standards tighter and tighter leaving the elite few, with physically perfect bodies (or the illusion of perfection – there is no such thing in reality) controlling the rest of us. This total focus on the outside obscures the fact that what is in us that makes us human are our hearts and minds and souls, and what makes us alike are our imperfections and our differences.
It is only possible for someone to be trapped in their physical body if their physical being and ability is the only thing about them that is acknowledged and valued. No matter how paralysed a person is, if they are regarded as valuable for something other than their physical abilities or lack thereof, if they are seen as something other than the sum total of what they look like, then they will never be trapped. They will always be free. Because true freedom is not dependent on physical perfection. True freedom is freedom of the heart and mind, of the spirit and soul, and that can never be taken from us.
Recognising the humanity of people with disabilities is not an act of political correctness; it is an act of emotional and social depth and maturity. It enables us to round out the myths and stories of human experience. The more we can recognise the diversity of our live, the more we can celebrate the commonalities. When we diminish others, we diminish ourselves.
My pocket Macquarie dictionary defines the word `disabled’ as “to make unable; cripple, incapacitate”. However as a person with a disability you soon learn that this definition is incomplete. You soon learn that there are definitions that are unspoken, unwritten, and it is these definitions that take precedence. You learn that being `disabled’ in the eyes of the world means more than any dictionary can define. Being disabled means being not good enough, not normal enough. Being disabled means you are too much, too dependent, `a fire hazard’. Being disabled means that you must put up with sub-standard treatment in all areas of life. It is more difficult to find a job, a place to live, friends to socialise with. You must settle for a life that is reduced to what the able-bodied community will allow you. But above all, being disabled means being silenced. In a world where every little detail of life is held up to scrutiny by the media, and there are more and more opportunities to learn about lives other than our own, the lives of disabled people as we live them are disturbingly absent.
There is plenty of information about disability available, page after page, and book after book written about people with disabilities, all written by able-bodied professionals, or able-bodied parents of children with disabilities, or able bodied ethicists, but very little of it written by people with disabilities themselves.
We are forbidden to talk about our lives as people with disabilities, yet at the same time, people expect us to talk incessantly, justifying our lives and explaining what is wrong with us, and justifying the assistance that we need, but never really wanting to know anything about who we are. They suck pieces of knowledge out of us, the facts about our disabilities, about what makes us different to them out of us, like emotional vampires, voyeuristic, never wanting to get to know us as people. We are forbidden to talk about our lives, we are too much reality.
The experience of being disabled is very rarely written about with force, and power, and passion, and with the recognition of our physical reality as being an acceptable one, and not something that needs to be `cured’. It is usually written about as a pitiful, pathetic way of living, and one that should always be exchanged for something `normal’. That is, `normal’ as it is designated by others who are looking at you from outside of your life and experience.
The most difficult thing about being disabled is not the physical pain, or the barriers to living life. The most difficult thing to deal with is other people’s perceptions, people’s barring us from existence, assuming that we are not quite human, that is what hurts the most.
Human beings fear the unknown, so that is why those of us with disabilities must tell our stories, all of our stories. The good, the bad, the painful and the difficult, so that we can know ourselves, and others will know us, and therefore there will be less fear. People’s perceptions must be changed, and they can be best changed by those of us who live on the outside, who are not allowed into the charmed circle of `normal’ people, we who see what others cannot or will not see. We can see what others’ attitude can do to us and to themselves. The usual ways of thinking about disability need to be challenged, and in being challenged, need to be changed. Human beings grow through evolving and changing, we are not meant to stagnate in one way of being. Our lives, our attitudes and our progress are not meant to stay the same.
It may be acceptable for others to define how they see us, but it is no longer acceptable for them to define who we are, or how we should see ourselves. That is a definition that only we who live with the reality of being disabled and the challenges this brings can give. It is only we who can define who we really are. And this definition must be taken as real and valid. As people with disabilities we have to demand the right to define ourselves, as WE see ourselves, and not allow who we are to be defined by how others see and react to us. We must show the world that the way they perceive us is only THEIR PERCEPTION of us, it is not who we really are, it is not what we can become.
Monday, January 8, 2007
When you will not hear my pain
You cannot share my joy
When you will not acknowledge my hate
You cannot feel my love
When you will not allow my weakness
You cannot be supported by my strength
When you will not accept my difference
You cannot appreciate my beauty
When you will not see me
That does not mean I don’t exist
Someone remind me what century we are living in. And so much for living in a supposedly civilised, first world country. This kind of thing keeps happening again and again.
January 03, 2007 12:00am
NEW allegations have emerged of physical, verbal and emotional abuse in a government disability home.
Police are investigating a staff member at a Hobart respite home providing short-term care for people with extreme physical and intellectual disabilities.
Staff allege the man dragged disabled clients by their hair, hit them, told them to "f--- off" and called them names including "f---ing idiot".
They say he dragged a boy across concrete, skinning his knees badly.
Staff say terrified clients would cringe when he shouted obscenities or threatened them.
He is accused of humiliating clients and taunting them.
Last year nine government disability group homes were closed because of serious systemic problems.
In the homes, maggots infested a young brain-injured man's feeding tube and a quadriplegic man's broken leg was not noticed for several days.
Disabled men on a trip were photographed in tourist stocks with a "lunatic" sign.
At the time, then Health Minister David Llewellyn apologised to families and said the standard of care had not been good enough.
Staff at the Hobart respite home at the centre of the latest allegations made their complaints about four months ago and have become frustrated at what they say is the Government's lack of action.
The Health and Human Services Department hired a private investigator to examine the allegations and received his report last month.
Staff believe they have been victimised for blowing the whistle and it is understood they have complained about losing shifts and receiving no support from management.
They have all taken stress leave.
The supervisor has been switched to another government facility.
Disability Services manager Graeme Foale confirmed the allegations had been referred to the police.
"Staff and clients will be advised when the investigation has been completed," he said.
Opposition health spokesman Brett Whiteley said the matter raised questions of process in the Health Department.
He said everyone had the right to be considered blameless in any matter, until an investigation proved otherwise.
"However, the appropriate process must be in place to deal with people expeditiously in cases such as this," he said.
"And importantly the process must not give rise to further concerns.
"It appears concerns have been raised with the process and timing in this matter.
"The minister, Ms Giddings, has the opportunity to calm the concerns of staff close to the matter and I urge her to do that."
Wednesday, January 3, 2007
Imagine having to justify your existence every day of your life. Imagine having to prove your intelligence to every one you encounter, even your own family. And imagine that intelligence being diminished, ignored and overridden by those whose only superiority to you is their ability to control the movement of their bodies. Imagine that complete strangers feel they have the right to stop you on the street and ask for the most personal details of your life. Imagine that people who have never met you or spent even five minutes in your company think that they have the right to determine whether or not your life is worth living. Imagine that, if you try and protest against this treatment, others have the right to declare you `hysterical' or `over-emotional', and ignore you, laugh at you, or worst of all; sedate you, pronounce you insane and lock you away. Imagine that at the same time as all this is unwanted attention is being forced on you because of your supposed `defects', who you really are is being rendered invisible.
When you have finished imagining this, and have thanked whatever higher power you believe in that this treatment is not YOUR lot in life, I ask you to consider the fact that this is what those of us who are disabled have to endure every single day of our lives.
We are made invisible by the same attitude that makes us public property. By the assumption that our physical and mental disabilities make us less than human, turn us into things for people to stare at and question with impunity, with no fear of reprisal. We are exposed to the prurient gaze of the well meaning public, stripped of all of the basic rights to privacy, our dignity and pride are ripped away, leaving us with only fear and shame, the most cannibalistic of emotions. When we are seen only for our differences, and the difficulties they cause; our humanity and realities are denied, we are not seen as people to love, respect and include, but as freaks, something to be fixed or shoved out of sight.
We are invisible people, for as long as we are only seen as stereotypes and objects of pity, and not seen for who we really are, we are not being seen. We live in a world that tells us constantly we are expendable, the most expendable of any marginalized group in the world. There is not one part of life where we are accepted - with the exception of the charity industry. We are invisible. And we are only allowed to be visible when we try to be `normal', and deny our disability.
Many of us are trapped in an unending exile, and the only help we are offered is insulting and facile. The assumption is that it is somehow the disabled person's fault, that we have to get out more, be more outgoing, be willing to make the first move/break the ice/make people feel more comfortable. Our isolation is blamed on the disability, and the supposed personality defects that go with it. No consideration is given to the view that perhaps any `personality defects' are not part of the disability itself, but the logical and tragic result of being treated as something less than human, that is not worthy of the same respect as someone without disabilities. Or to the idea that it may be that people who reject us, are doing so for no other reason than that we look and act a little different to them.
We are invisible because what is done to us, is hidden, out of sight, trapped under piles of words, excuses, reasons and rationalizations. We are invisible because what is done to us is not seen, and because what is done to us is not quantified and cannot be physically proven. Because it is so easy to say that something that is the result of mistreatment, is really a symptom of the disability.
We are invisible because all the best bits of who we are, and all the things that mean most about our lives, are not the things that are obvious, that can be seen at first glance, they cannot be laid out like a resume, and cannot be properly be put into words.
We are invisible because people refuse to see us, not because we do not exist. People are scared of us because they see in us what can happen to them. They try and make us disappear, so they do not have to be aware of our realities. We are the scapegoats, we carry their fear, we absorb it for them, so they don't have to think about it, so they do not have to feel, so they do not have to be crushed by it.
The invisibility that we suffer from is far more crippling than any disability, and more infectious than any disease. But there is a solution. It requires that you have the courage to acknowledge the fact that our disabilities should not separate us from the rest of society. You need to be able to acknowledge the fact that it is your weaknesses and inability to see us as human, that causes us the greatest pain, and not our disabilities. And it requires that you develop the insight to see as who we really are and and for what we can become.
Monday, January 1, 2007
here I am, testing it out. It would be good to also have a stand alone
blogger client as well, but I'm not sure how the ones that I've come
across so far will work with the new Blogger setup. It's really hard to
find information about blogging clients on the Blogger website. Is it
possible I'm missing something obvious?
I'm slowly adding to my blogroll on the right. There are so many great blogs out there, follow the links and you won't be disappointed. I will continue adding blogs as I find them, so keep checking back. It's all a bit hit and miss, I keep following links down the rabbit hole and forgetting or losing links to blogs that I want to link to. If you know of any blogs you think I've missed or that I should be aware of, please let me know. At this stage I'm focusing on disability, feminism, abuse and writing/literature, as these are my main interests and preferred writing topics.
Planning on getting my scooter taken in for an overhaul and battery change, so I will be stuck at home for the next week or so. I'm working on a post for the next Carnival of Feminists, and hope to get some other new things written as well.
“You and I”
I am a resident. You reside.
I am admitted. You move in.
I am aggressive. You are assertive.
I have behavior problems. You are rude.
I am non-compliant. You don’t like being told what to do.
When I ask you out for dinner, it’s an outing. When you ask someone out, its a date.
I don’t know how many people have read the progress notes people write about me. I don’t even know what is in there. You didn’t speak to your best friend for a month after they read your journal.
I make mistakes during my check-writing program. Someday I might get a bank account. You forgot to record some withdrawls from your account. The bank called to remind you.
I wanted to talk with the nice looking person behind us at the grocery store. I was told that it was inappropriate to talk to strangers. You met your spouse in the produce department. They couldn’t find the bean sprouts.
I celebrated my birthday yesterday with five other residents and two staff members. I hope my family sends a card. Your family threw you a surprise party. Your brother couldn’t make it from out of state. It sounded wonderful.
My case manager sends a report every month to my guardian. It says everything I did wrong and some things I did right. You are still mad at your sister for calling your mom after you got that speeding ticket.
I am on a special diet because I am five pounds over my ideal body weight. Your doctor gave up telling you. I am learning household skills. You hate housework. I am learning leisure skills. Your shirt says you are a “couch potato.”
After I do my budget program tonight, I might get to go to McDonald’s if I have enough money. You were glad the new French restaurant took your charge card.
My Case Manager, Psychologist, R.N., Occupational Therapist, Physical Therapist, Nutritionist and house staff set goals for me for the next year. You haven’t decided what you want out of life.
Someday I will be discharged - maybe. You will move onward and upward!
-- By Elaine Popovich
And this is my comment/addition to it:
Yes. Yes. Fucking damn it. And then people have the bloody nerve to assume that our depressions, our breakdowns, our bitterness is a result of our disability.
I have hydrotherapy, and can only use hospital pools. You go swimming, and can use whatever pool you want to - and can choose the one with your desired gender to admire.
I have respite care (and am someone that others need to have respite from), you have holidays, and can choose where to go, and earn enough to have that choice.
I have recreation options, you have hobbies, passions, activities you choose to do.
I have to justify my existence to every badly behaved troglodyte who thinks they have the right to ask me what is ‘wrong’ with me, you have your privacy that you can take for granted.
I have to be aware of all of this every damn day, you take your dignity for granted, and don’t have to be aware that not everyone can do so.