Friday, December 15, 2006
A few things I've read on the internet today have reminded me of something I've been meaning to write about, but avoiding. Avoiding for years. I think it is time to write about it, but I don't know if I've got the time to go into it tonight
Touch. The lack of. Touch hunger, tactile deprivation, touch starvation.
As with anything, I write about this from my own personal experience, but I know it affects others (and of course, not just people with disabilities), too. It's another one of those subjects, the dance-around-it subjects, the if-we-ignore-it-it-will-go-away subjects.
I don't suffer from my disability - I never use that word in that context, that's something that others assume of me, but I do suffer from some things, I suffer from people's attitudes, I have suffered greatly as a result of my family's abuse of me, and their tacit approval of others who abused and assaulted me. I also suffer from touch starvation.
Living with a disability is to live a life full of contradictions, and this is one of the biggies. On one hand, you are touched a lot - especially as a child - docters and nurses poking and prodding and pulling at you, physiotherapists torturing... ahem, sorry, giving you physiotherapy, family and carers helping you walk, climb stairs, get up out of chairs, up off the ground, etc.
On the other hand - unless you are lucky enough to have family and friends who can think past the prejudices and assumption, and some people with disabilities are that lucky - you learn from an early age that you are essentially untouchable. People shy away from you, literally - I've had people physically recoil from me. We are seen as repulsive, objects of pity, asexual, less than human. Unclean. Some of us can go for months, years (years is probably an exaggeration - even in my case, but oh, it feels that long, sometimes) without affectionate touch from another human being.
OK. This appears to be all I can write at the moment. I have difficulty with this, not because I'm embarrassed about it, but because it is one of the most painful realities in my life.
Here is one of my favourite quotes relating to this whole topic, although I wasn't referring specifically to sexual touch writing the above, it is on the agenda, though. The article the quote comes from is excellent.
"Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about - and formulate strategies for changing - discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction." - Anne Finger http://www.newint.org/issue233/fruit.htm
I will write more on this, soon, eventually.
[And I did, surprisingly, on 5 February 2006]
My Skin - A Touchy Subject - Part 2
My skin has shrunk into itself
after almost 32 years of not being touched
except to remind me of how untouchable it is
and to remind me of its gaping flaws and wounds that people will fall into
if they come near me
The pain of this leaves me two seconds away from dying
Years of physiotherapy - being pushedpulledstretched
into painful awareness that my body is worthless as it is
So it must be tortured into normal
It didn’t work
I never became normal (Thank God!)
but I tuned out my body
so I didn’t feel the pain
Only time my parents touched me was for exercises that hurt so much I wanted to cry and scream - but I was too scared to.
Huge adults leaning over me shoving my legs into shapes they weren’t designed for, folding up my legs and leaning on them with their full 6 foot basketball/rugby/sports playing weight
Yelling at me when I refused to do the exercises - lazy, lazy, lazy...
Cold eyes staring at me when I came home crying - pushed down steps, tripped up, punched
Sharp words slicing, blaming, condemning
All I wanted was a hug, to feel safe, wanted
Comforted (I can’t say, think or write this word without crying)
“You can’t be in pain, I can’t feel anything”, said my father, smile locked into place with mocking laughter
“Growing pains”, said the doctor - I didn’t know what muscle spasms were until I was well into my twenties
No one told me that they were a normal - but painful - part of spastic CP - not the doctors, physios.
Did they even know?
Psoriasis came when I was sixteen
My skin growing extra layers of hardness
Layers that my heart had not yet developed
Leaving me still hopeful that I would be touched
with gentleness, affection
and for no other reason than to give joy
Occasional glimpses of what could be, what I could have
Relationships over before they really began
With men who I couldn’t have stayed with, even if they hadn’t left first
I am glad they left
But I learned why I had a body
And that if I could enjoy sex (and how I did!) then my body was fine, practically perfect
Unfortunately, this is one of the few things I like best when there is another person
I love sex
But I can’t be casual about it
And now only want it with someone I love
and who loves me (Woody Allen notwithstanding!)
My tears dry up before they fall
pulled back inside myself
by a heart that has become a desert
Words are the poorest substitute for a touch given with awareness
but they are all I have
And, no, a massage wouldn’t help, getting a pet wouldn’t help (I am poor, I can barely afford to feed myself)
The emptiness is too overwhelming
I want someone to look after me for once
And how do I talk about the fact that sometimes, if you have a disability, you don’t get looked after (there is this odd belief that all people with disabilities have someone to look after them - perpetuated by people who don’t know anyone with a disability) - no one ever believes me
It’s true, even if you don’t believe me
Sometimes you get nothing, not even the basics
Cruelty and neglect are equal opportunity - they do not discriminate
Nobody wants to hear any of this
I don’t want to hear any of this
But it is my life
This isn’t a poem, this is the only way I can write about this.
Monday, December 11, 2006
[Originally written on 26 September 2005]
This short - and incomplete - rant was prompted by several recent encounters and discussions. This poem was also one of the prompts for this rant.
Humans helping other humans is part of the social contract we should all be participating in, but I object to people who insist on `helping' me when I clearly don't need help, simply because they assume that having cerebral palsy makes me incompetent, and because they want to feel better about themselves.
You can tell the difference, if the people offering help see you as a fellow human being, they will *ask* first, and listen to the answer, and when you say, politely "Thanks for the offer, but I'm fine, I can manage", they won't take offence. And if you say, yes, thanks I could do with some assistance, they do whatever it is calmly, maturely, and if it actually involves physical contact with me or my assistive devices they *listen* to me when I say this is the best/easiest/least painful way of doing it. And they are happy with a simple "Thanks very much, really appreciate the assistance, have a great day" or other appropriate response. Help from those people is a pleasure.
If the people offering have some idea of themselves as `ministering angel', 'helping the unfortunate cripple', then they just barrel in, grab, push, whatever without asking - which can be dangerous, and if they do ask, and you refuse - politely (I stress that - because I'm always polite the first time, unless I'm physically grabbed without warning, then I scream bloody murder with *no* apology), they get sooooo offended - how *dare* I not let them help me, never mind that sometimes I'm just sitting there, and there is literally *nothing* they can help me with, even if I *wanted* to let them help me. I was sitting in the mall one day, in my scooter, enjoying the sunshine, reading a book - guy comes up to me out of nowhere "Can I help you?", Me, very puzzled thinks, help me with what? I'm not *doing* anything, do you want to turn a page for me?. "Um, no thanks."
We have the same right of refusal of assistance than any able-bodied person does. And it's the attitude of the person offering, I'm a human being, not some mindless cipher for someone else to project their fears and assumptions onto.
I also don't much like "help" from people who cannot understand that I'm also someone who can provide others with assistance when I can. It's the one-sidedness that galls, the assumption that I am not also a contributing functioning member of society in my own way.
But I feel censored a lot of the time, about this sort of thing by both able-bodied and disabled people, and get berated and attacked (who would have though expecting people to treat you like a human being would result in such attacks!) by some as well who tell me I'm `ungrateful'.
I will not coddle or patronise able bodied adults by assuming that they can't treat people with disabilities like human beings. They need to think about how they treat `Others', and I expect them to behave like the adults they are and *think* about their attitudes. Just as I do when I'm in a new situation or around people I'm not familiar with.
"White Ribbon Day was created in 1991 on the second anniversary of one man's massacre of 14 women in Montreal, by a handful of Canadian men who began the White Ribbon campaign to urge men to speak out against violence against women.
Did you know... Worldwide, 1 in 3 women experience some form of violence.
In Australia - 57% of women have been subjected to violence during their lives.
- Domestic violence contributes to more ill-health and premature death than any other single cause for women aged 15-44.
Internationally - Women are the highest proportion of the adult civilian population killed in war, and targeted for abuse.
- Women and children make up the majority of refugees and internally displaced people forced to flee their homes due to armed conflict.
- Rape is used as a weapon of war and a method of intimidation by military and other conflict groups.
Wearing a white ribbon is a personal pledge to not commit, condone nor remain silent about violence against women and children."
[The above was taken from publicity for an event for this year's Day - there aren't any cites for the stats on the publicity and I'm still trying to load up the Amnesty International Australia page to check]
The following is a speech I made at a public event held on last year's Day.
VIOLENCE AND WOMEN WITH DISABILITIES
Talk for International Day for the Elimination of Violence Against Women – 25 November 2004
`Whether we speak or not,
The machine will crush us to bits--
and we will also be afraid
- Audre Lourde
A 13 year old girl is repeatedly threatened by her classmates. "After school we are going to get you behind the bike sheds and you're dead, we're going to kill you." As she walks through the halls at school, boys run past her and hit her on the shoulders and back, hard. These same boys push her down high flights of steps. And it's not just the boys, the girls too have their own form of assault. They use words, silence, subtle innuendo. The teachers do nothing. She lives in a constant state of fear, not knowing when the next blow will fall, where the next insult will come from. At home there is no reprieve. She is still not safe. She tells her mother what happens at school. Her mother tells her "They pick on you because you are obnoxious." She has nightmares, several times a week she wakes up screaming, she is trapped, and no one is there to help her or protect her. There is no escape.
This is a true story. But not one hundred percent true, I've left out one thing. The girl in the story has cerebral palsy. She can walk, but with difficulty, and she often trips and falls. She cannot run away from her attackers. She is at their mercy, and they don't have much of that.
When I wrote this talk, the hardest part was not deciding what to talk about, but deciding what to leave out. I have so many stories like this one, the details are all different. But they are all true and I lived though them, barely.
I grew up in a family that verbally and emotionally abused me because they couldn't cope with my disability. I was constantly criticized and insulted. My parents bullied and intimidated me, yelling at me when I fell over or was unable to keep up with them. They refused to help me when I needed it, and didn't even give me the basic love and care that all human beings need and should have. As far as they were concerned I was defective, broken, something to be ashamed of. And I believed them. I had no choice. There was no one around to tell me any differently.
I have suffered from severe clinical depression since the age of seven and first thought of suicide at the age of 12. The pain of living with what had been done to me and the loneliness and isolation was so unbearable that 8 years ago I ended up in hospital twice in 6 months after overdosing on pills. After the first suicide attempt I went to my parents place for the weekend. My depression meant that I hadn't been eating properly for months and had lost a dangerous amount of weight and was weak and shaky, I was also suffering from severe insomnia. The first night at my parents I was unable to get to sleep until 4 am. I was woken up at 8 am, and was given a list of household chores to do, including vacuuming the whole house. Apparently, according to them, I was depressed because I didn't have enough to do. My family have always refused to see or admit that there is anything wrong with the way that they treated me. The abuse continued until I was 27 years old, when I finally cut off all contact with them. I have suffered from nightmares several times a week for twenty years. The week after I spoke to my mother for the last time, the nightmares stopped.
Violence against women with disabilities is a taboo subject, most people don't want to know that we are mistreated and abused. I can't count the amount of times people have said to me, "But your family wouldn't treat you like that, no one would abuse a child with a disability, your parents must love you." It has been very hard to argue with those responses. I didn't, and still don't, want to acknowledge that I was treated the way that I was. I want to believe that I have a family that loves me, that sees me as a valuable person and someone worth protecting. But I don't. I've only just realized in the last few weeks - that if you love someone, you don't deliberately mistreat them, and you don't stand by and let others treat them badly.
We live in a world where people with disabilities are seen as objects. Objects of pity, objects of fear. You don't have to treat an object with respect, you can do whatever you like to it and no one will stop you. One of the most difficult things to cope with as a person with a disability is the fact that many non-disabled people only see the disability when they look at you. As a result you unwittingly become public property. It is very common when you have a disability to be accosted in the street by complete strangers who demand to know "what is wrong with you", and expect you to drop whatever you are doing to give them an answer. I've been asked - with no warning at all - such questions as "So, what have you done to yourself then?", "How long have you been confined to that" - indicating my scooter, and "What's wrong with you, you don't look sick". I've had a number of people come up to me over the years and tell me "Oh, I think you are so brave, if I was like you I would kill myself". There are many stereotypes about women with disabilities. Stereotypes that paint us as weak, dependent, asexual, incompetent, unattractive, and drains on the economy. We are none of these things. Neither are we tragic heroines overcoming our disabilities, or particularly brave or inspirational. We are simply human beings, living our lives, as flawed and imperfect and as real as anyone else. Unfortunately many people still mistake the stereotypes for actual facts and this leaves us vulnerable to violence, neglect and abuse.
People often say to me that they don't know how to behave around people with disabilities, they don't know what to or how to act. This is often used as an excuse or reason for our mistreatment. There is no excuse. Any form of violence directed towards women with disabilities is unacceptable. We should not have to live in fear.
There is very little research on violence and women with disabilities. The research that has been done exposes a terrifying reality. Women with disabilities are more than four times as likely to be assaulted as other women. We are significantly more likely to experience emotional and sexual abuse than able-bodied women, with the abuse lasting for longer periods of time. As many as 83% of women with developmental disabilities have been sexually abused. At least 85% of women with disabilities have experienced domestic violence.
For the last 18 months I have been organizing monthly forums for women with disabilities. We have speakers on a wide variety of topics that are relevant to our lives. The forums are a place where we can get together and share information and experiences, meet others who have gone through the same things. Too many of us have been victims of abuse, subjected to violence at the hands of our families, our partners, our caregivers and strangers. In September our group received funding to run a self defence course specifically for women with disabilities. Every one of the women attending the course had been subjected to some form of violence or abuse, at least once in their lives, either at home or out in the community. The self defence techniques we learned have meant that we all feel more able to defend ourselves if we are attacked. It is essential that women with disabilities have the chance to learn how to protect themselves and I hope to get funding to run this course at least once a year.
Speaking up about such a controversial subject as this one is not easy, but it is the only way to stop the violence and start making changes in the way women with disabilities are treated. It is agonizing to be up here and tell you the things I have today, but I can't, and I won't, keep silent about them. I don't want anyone else to go through the hell I went through, the hell I know too many other women with disabilities have been through. It never goes away. Even when you have control over your life and are no longer in danger, the scars remain, the memories never entirely leave you. Apparently adversity and suffering develop character, or so people keep telling me. Trust me, nobody needs this much character.
There are three things that I'd like to say to anyone who recognized themselves in what I've been talking about, any woman with a disability who has experienced any kind of violence or abuse:
It is never your fault, you do NOT deserve to be treated like this.
Don't keep silent about what is happening, tell someone you trust. If they don't believe you, keep trying until you find someone who does.
You are not alone, there are people out there who do care, who will help you. They may be hard to find, but keep going until you do.
And one last thing to everyone here today, the most important thing. Please remember, we are not only our disabilities. We are more than statistics. We are your daughters, your sisters, your mothers, your wives, your friends and coworkers. We are women.
On people saying, ”I don’t think of you/myself as disabled“ and/or ”Disability is all in your mind“
At this point in my life I have no problem in identifying myself as ‘disabled’. I have cerebral palsy and there *are* things I can’t do, or have great difficulty with. These things do need to be acknowledged, or else I’m at risk of pushing/being pushed past my limits, and causing a great deal of damage. I used to be around a lot of people who would say ‘I don’t see you as being disabled’, and would use that as a reason to deny me the very real assistance I needed, and at the same time they would contradict themselves by obviously treating me as ‘less than’ and ‘inferior’, and continually make a big deal of my disability (??!!) - the one they didn’t see me as having! As a result I was very screwed up for the first 20 or so years of my life. Felt like I was weak, not really disabled, faking it (I have *cerebral palsy*, I was *born* with it for fuck's sake! But that’s the damage those attitudes caused), and pushed myself to an insane point, damaging both my body and my psyche.
Anyway, for the last five years I’ve ‘come out’ to myself and society about being disabled - and doing so much better. Achieving much more than I thought I could, and taking care of myself better. Ironically, the able-bodied people I’m around now don’t come out with the ‘I don’t think of you as disabled’ line, they acknowledge my disability, and value me because of everything I am, including the knowledge I have from living with a disability 24/7. They will discuss things with me, and allow for my limitations, and treat me with far more respect than those who tried to pretend it wasn’t there.
For me, it’s about seeing reality, and being seen as disabled is only a bad thing for me if I buy into the bullshit that being disabled means I’m inferior. It doesn’t mean that at all. I would no sooner say I didn’t see myself as disabled, as I would say I don’t see myself as female or white, or blue eyed. It is part of my reality, and for me denying that reality is far more damaging than the disability itself or even society’s discrimination.
It’s also about fighting against the current trend for papering over the cracks - for making everything seem ‘nice’, and ‘positive’, so that people don’t have to think and feel, especially about the difficult and the painful parts of life. A colossal and ultimately dangerous form of denial. Plastic surgery for the mind, soul and heart.
A lifetime of being surrounded by this does so much damage, and I have found myself rebelling, at last.
Sunday, December 10, 2006
Mother to Be: A Guide to Pregnancy and Birth for Women with Disabilities - Judi Rogers and Molleen Matsumura, eds.
Women with Disabilities: Essays in Psychology, Culture and Politics - Michelle Fine and Adrienne Asch, eds.
With the Power of Each Breath: A Disabled Women’s Anthology - Susan E Browne, Debra Connors, and Nanci Stern, eds.
Mustn’t Grumble: Writing by Disabled Women - Lois Keith, ed.
Encounters with Strangers: Feminism and Disability - Jenny Morris, ed.
Past Due: A Story of Disability, Pregnancy and Birth
Elegy for a Disease - Anne Finger
Voices From The Shadows: Women With Disabilities Speak Out - Gwyneth Ferguson Matthews
Claiming Disability: Knowledge and Identity
My Body Politic: A Memoir - Simi Linton
Living Outside Inside: A Disabled Women’s Experience - Susan Hannaford
Different But The Same: Young people talk about living with serious illness - Heather Cameron (Australian)
The Rejected Body: Feminist Philosophical Reflections on Disability - Susan Wendell
Women With Disabilities: Found Voices - Mary Wilmuth and Lillian Holcomb, eds.
Exile and Pride: Disability, Queerness and Liberation - Eli Clare
Restricted Access: Lesbians on Disability - Victoria A Brownworth & Susan Raffo, eds.
With Wings: An anthology of literature by women with disabilities - Marsha Saxton & Florence Howe, eds.
Carnal Acts: Essays
Remembering the Bone House: An erotics of place and space
Waist-High in the World: A Life Among the Nondisabled
Ordinary Time: Cycles in Marriage, Faith and Renewal
Voice Lessons: On Becoming a (Woman) Writer
Plaintext: Essays - Nancy Mairs
Oyster Grit: Experiences of Women With Disabilities - Victorian Women With Disabilities Network (Australian)
Pride Against Prejudice: Transforming Attitudes to Disability - Jenny Morris
Lives Worth Living: Women’s Experiences Of Chronic Illness - Veronica Marris
The Sexual Politics of Disability: Untold Desires - Tom Shakespeare, Kath Gillespie-Sells & Dominic Davies, eds.
Too Late to Die Young: Nearly True Tales from a Life - Harriet McBryde Johnson
Female Forms: Experiencing and Understanding Disability - Carol Thomas
Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being - Danuta M Krotoski, Margaret A Nosek & Margaret A Turk
Health information for girls and women with a disability
Women With Disabilities Australia
Disability Studies and Feminism Online Magazine
Disability Cool: Sexuality R Us - info on sex and relationships for
women with a disability
Disability World Magazine - Up to date info on disability issues
around the world - specific section for women’s issues
Crip Commentary - Laura Hershey’s homepage
Abuse and women with disabilities
1. Courtesy of Disability Studies, Temple U.
2. "The Cure"
3. Perspectives on Spirituality
4. Different Ways of Going about Things
The fifth disability blog carnival will be up at Planet of the Blind on 14 December. The theme for this carnival will be "Traveling with a Disability: The Good, the Bad, and the Ugly."
“There are many issues and concerns that affect women with disabilities, some of the more obvious ones include; poverty, finding employment, accessible housing, health care, sexuality, domestic violence, accessing education, and dealing with a physical environment that is still largely inaccessible. I imagine that many of you already have some awareness of these issues. They are very important, and affect our lives on a daily basis. But I’m not going to talk about any of those things in great detail today. Instead, I’d like to talk about a few of the less tangible challenges we face, along with the ways I hope the forums will address and provide possible solutions to them. I’d also like to give you some idea of the many ways that women with disabilities can contribute and are contributing now to the world.
One of the most difficult things to cope with as a person with a disability is the fact that many non-disabled people only see the disability when they look at you. As a result you unwittingly become public property. It is very common when you have a disability to be accosted in the street by complete strangers who demand to know ”what is wrong with you“, and expect you to drop whatever you are doing to give them an answer. I’ve been asked - with no warning at all - such questions as ”So, what have you done to yourself then?“, ”How long have you been confined to that“ - indicating my scooter, and ”What’s wrong with you, you don’t look sick“. I’ve had a number of people come up to me over the years and tell me ”Oh, I think you are so brave, if I was like you I would kill myself“. A very disturbing thing to hear when you are simply out and about minding your own business.
Women with disabilities are not seen and valued as women. The mainstream view of beauty does not allow for spastic or amputated limbs, scarred bodies or bodies that have limited movement. It doesn’t allow for slow or slurred speech. It doesn’t allow for anything but the most limited ideas of beauty - something that as we all know affects non-disabled women as well - but it can be very difficult when you have no chance of living up to even the broadest definition of normal. And we still live in a world where a woman’s value is often defined by her looks. It is still a fight for a woman with a disability to be seen as intelligent and capable of looking after herself and others. Our sexuality is denied, and many in the community and the medical profession still doubt our ability to have and to raise children. It is harder to form relationships and friendships - we are still seen by some people as burdens and incapable of giving and receiving affection and support. However, some women with disabilities do manage to have these things in their lives. Unfortunately too many of us are unable to take these opportunities for granted. This must change.
The forums can provide us with an opportunity to acknowledge and celebrate our various roles in life and our innate value as women, not despite our disabilities, but with them, and all the other aspects of our lives.
In the forums we are sharing our experiences and learning that we are not alone. We celebrate who we are and what we can achieve, we acknowledge the painful and difficult aspects of our lives. The forums have covered and will cover many different topics relevant to women with disabilities, all of the issues I’ve already mentioned, along with many more. We will also be running the self defense course that we received funding for recently. Other plans include running more in-depth forums on things like sexuality, parenting with a disability and nutrition. I hope that we will be able to develop the forums into an sustainable organization for women with disabilities that is run by us. Women in the forums have put forward ideas that include a magazine that is run by women with disabilities and showcases all aspects of our lives, and a fashion show. These are just a couple of examples, there are and will be many more. One of my own plans for the future that is very close to my heart is to set up a mentoring program for women with disabilities to support and encourage younger women and teenage girls with disabilities. I hope in this way we can reduce the isolation that too many younger women and girls with disabilities suffer, and provide them with role models who can show them that they have the potential to become valuable and amazing women.
I’ve been asked to mention possible ways in which you all could provide assistance and support to help the forums keep running and become a sustainable and ongoing project.
Obviously, things like funding and other practical supports are necessary, but today I’d like to ask you all to go beyond that if you can. The support that all women with disabilities really need, is the awareness and acknowledgment that we are truly valued and respected as women, standing alongside all other women. Please get past the stereotypes that society and the media perpetrate, stereotypes that paint us as weak, dependent, asexual, incompetent, unattractive, and drains on the economy. We are none of these things. Neither are we tragic heroines overcoming our disabilities, or particularly brave or inspirational. We are simply human beings, living our lives, as flawed and imperfect and as real as anyone else.
Work with us in challenging and shattering these myths and prejudices that can make our lives so difficult. Come along and help out at the forums. Get to know us, learn about our lives, see the things we have in common with you. Who knows, you may even make new friends and professional connections. Like any group of people there is a variety of experiences, opinions and personalities among us. We don’t always agree with each other, but all of our viewpoints are valid, and we all deserve to be heard. Share what you learn about us with others, tell them that we are more than the sum of our disabilities, correct their misconceptions if you can.
I’m asking you to think about these things not just for our benefit, but also your own. Any of you could become disabled at some time, either through accident or disease, you may already have some form of invisible disability such as depression or joint or back problems. You may have family members or friends who are disabled. Wouldn’t it make life easier to know that having a disability is not a fate worse than death, to know that it is not something to fear, but something that can be lived with, and, with the support and knowledge of those of us who have gone before you, to know it is something that can be lived with well.”
I’m struggling at the moment with a few difficulties, all of which can be placed under the umbrella of not feeling able to speak out about really painful and unbearable realities that I’m faced with, and have been for most of my life. These issues are really important and I know there are so many other people faced with them who need to know that it’s not just them. I have wanted for a long time to do something to make sure that others don’t suffer in silence the pain that I went through.
It’s hard, though. I worry about not being believed, about being subjected to even more abuse from others who don’t want me to speak of what I know. It silences me - take this post for example, so fucking wishy-washy, dancing around the truth, or even definite statements.
I’ve started this post so late, so that I know I won’t have time to really write anything of substance before I have to get some sleep. Great self sabotage!!! So I will list the things I want to write about, and get back to them later.
My family couldn’t handle my disability, or any way of being that was different to their own. (Sexist, homophobic, and racist too. Real charmers.)
As a result, they neglected and abused me emotionally and physically.
When you are disabled, people don’t need to physically hit or attack you to abuse you - all they need to do is refuse to give you the necessary help and support. Ie. I have cerebral palsy, my balance is shit, walking up and down stairs and steps is fucking scary especially as I’m terrified of heights. My family refused to help me down stairs and steps (even ones without hand rails) when we were in public. Once they took pictures of me crawling backwards down a flight of steps, at age 13, in a skirt, on a very windy day, at a crowded tourist attractions. I was forced to resort to crawling because they refused to help me, they stood at the bottom, took pictures and laughed.
This is just one example from 20 years of consistant abuse, ignorance and denial of my needs - not just my needs as someone with a disability, but my needs as a human being. I cut off contact with them a few years back, and my life has improved by leaps and bounds. I had nightmares 3 or 4 times a week from age 7 to 27. The week after I told my mother that their treatment of me was unacceptable and I no longer wanted contact with them, my nightmares STOPPED, and I only have them once every couple of months.
I had to learn how to socialise with people as an adult. I had no idea that having conversations with people involved ‘back-and-forth’. I only knew how to bombard people with words as my family had done to me.
I have to live with the knowledge that, for all intents and purposes, I have no family. It is not safe, physically or emotionally for me to be around any of them.
To quote from one of my favourite tv shows “Sometimes my life sucks beyond the telling of it”
The CP is not the worst thing that has happened to me, not even close. Disability is a neutral thing, it is the prejudices of the rest of the world that make life hard.
I am SO FUCKING ANGRY at what has been done to me, at what has been done to others like me. There is of course more to my life and my story than what I have written here, and this is not me at my most coherent.
For many years my goal has been to write about these things, bring them out in the open - force the world to see what is being done to too many people with disabilities (note - these things do not happen to all pwd’s - I know many who have loving, supportive families. This is how I know that these other things that happened to me and many others are wrong.)
Sometimes it is hard to fight.
I just want to have a family that loves me. (Treacherous voices in my head tell me I am being whiny and self-absorbed. I know I am not, and I know there is a problem with that attitude of thinking that anyone who speaks of their pain and suffering from *their* perspective instead of hiding it neatly and tidily away is damned as whiny, self centred and many other ‘bad’ things.)
The pain does not get any easier.
The loss cuts deeper by the day, I cannot get used to this.