"Because I Are One"
"Laying your hands on me without invitation, strangers, sure isn’t going to speed me up any, but it may well piss me right the fuck off. With some of my friends with certain disabilities, an unexpected assault may tip them completely over."
Dear ABs, please read, mark and inwardly digest this post (and everything else written about disability at Hoyden About Town). The world does NOT revolve around you.
This includes drivers who park their cars across the fucking footpath. Do I plonk my scooter in the middle of the road and wander off and leave it there? No. So stop parking illegally and putting me in danger.
(Wow, it has been a very long time since I posted here, completely forgot how to post links...)
Showing posts with label attitudes. Show all posts
Showing posts with label attitudes. Show all posts
Friday, January 9, 2009
Sunday, December 30, 2007
How is it possible...
...to keep going when you are told every minute of every day that you are of less value than others, that you do not deserve the same care, support and consideration as `normal' people, when the abuses against you are excused and reframed into `care'?
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?
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
And for those who fight when I can’t.
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.
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
Dear Able-bodied People....
...your discomfort with me and my very obvious disability and method of getting around is not my problem. Keep it to yourself. And if you can't think of anything sensible and adult to say to me (hint - "does it [my scooter] go in reverse?", and, "Oooh, when do we get a go on that?", are neither of the above), especially when you encounter me at an event for non-profit workers when I am there as someone who has created and developed a non-profit organisation from the ground up, then you really shouldn't be working in the fields that you are. We don't exist solely for you to do good works on.
And I thought I had problems with social contact... :-/
And I thought I had problems with social contact... :-/
Wednesday, March 14, 2007
Better late than never... International Women's Day 2007
I just read this excellent post by Andrea, and realised that I had forgotten to write anything about International Women's Day a week or so ago. Then I remembered that I had written something in the last two or three weeks that would fit the bill. Over the last few years that I have been `out' as a disability activist and as a feminist, I've come across many people, online and off, who have been unable to understand that disability issues, and the lives and concerns of women with disabilities are relevant to feminist thought and action. The fact that women with disabilities are actually women is something that a lot of people have trouble grasping. And so, after a lifetime of having my gender denied, of being sexless and not quite human to too many people, I finally exploded a few weeks ago, and this is the result.
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.
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.
Wednesday, January 10, 2007
"In A Fit Of Rage"
An excellent post at Random Reminiscing Ramblings: Dear ableist
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.
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
[Monograph for university course 2001] The Tragic Body
I am sick to death of my disability being thought of as a major tragedy in my life and the lives of those around me. The real tragedy is society’s reaction to disability. Because it not only has a lasting and damaging effect on people with disabilities, but because it also has a lasting and damaging effect on society itself.
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.
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.
[Monograph for university course 2001] The Marginalised Body
In today’s world, with the importance placed on physical ability, strength and beauty, it is easy to forget that an entire section of our society has marginalised, ignored and made invisible, by these beliefs and convictions. For too long people with a disability have been excluded from life because our bodies are not within the range of ability and appearance that is deemed acceptable by society. A society that adheres to the simplistic belief that what is beautiful on the outside must be beautiful on the inside; and therefore what is deformed, misshapen, ugly, and disturbing on the outside, must also be these things on the inside.
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.
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.
[Monograph for university course 2001] The Forbidden Body
[I wrote this before I had spent much time on the internet and found that there was a lot of writing by people with disabilities in cyberspace. If only the internet had existed when I was a teenager. :-) ]
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.
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.
Wednesday, January 3, 2007
"Invisible Lives" - an older piece of writing
[Slightly edited from its original form to reduce occasional incoherence and increase readability - I had only just started getting things down on paper about disability at that time, and was still very new to the social model of disability and to the idea that what I was feeling about my life and my disability wasn't just peculiar to me, and that the difficulties I had faced all my life weren't my fault. So, baby-activism!]
INVISIBLE LIVES
Copyright 2000
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.
INVISIBLE LIVES
Copyright 2000
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.
Friday, December 15, 2006
A Touchy Subject
[Originally written on 10 December 2005]
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
every day
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
and comfort
and pleasure
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
deserted
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
Right now
Today
But please
Not tomorrow
This isn’t a poem, this is the only way I can write about this.
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
every day
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
and comfort
and pleasure
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
deserted
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
Right now
Today
But please
Not tomorrow
This isn’t a poem, this is the only way I can write about this.
Monday, December 11, 2006
A Rant On "Help"
[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.
To be... disabled, Or not to be... disabled
[Originally written on 10 September 2005]
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.
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.
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