Just for the Record - my first 1st May BADD post
Having joyfully found my lost original 1st May contribution to BADD from the www, via my site meter, I am re-posting it here, and thank everyone for their comments, which are still attached to my truncated 1st May post.
I used the Goldfish's categories for inspiration:
Abortion and Euthanasia
I am old enough to have been spared abortion. If I had been an impaired foetus, technology had not progressed to looking at a foetus in the womb and so society, then, had not progressed to deciding on its economic viability.
I will be old, sooner or later, depending on my degree of impairment. I hope that society has not progressed, by that time, to economic euthanasia.
Access Issues (outside employment)
Nine years ago I was given a NHS manual attendant wheelchair (I cannot self propel) but the NHS did not provide an attendant to push me. I stayed at home, waiting for volunteers. Six years ago I requested, but was refused, a NHS electric wheelchair. Five years ago I had begged enough charity to buy one.
Then I asked the District Council and the County Council social services for wheelchair access into my home. Four years ago I asked for wheelchair access inside and around my home and the NHS assessed me as eligible for an electric wheelchair but, as I had an outdoor electric wheelchair, with their funding I had to promise to only use their funded wheelchair indoors. They would fund 20% of the cost. Two years ago (after I had waited two years) the County Council social services assessed me as eligible for wheelchair access into the house and into principal downstairs rooms.
Last week I asked the Local Government Ombudsman to look into why the County Council were still preventing me (and wheelchair using friends) from having wheelchair access into my home; preventing me bringing my outdoor wheelchair indoors for storage and charging; preventing me having the use of an indoor electric wheelchair; preventing wheelchair access to principal downstairs rooms; preventing assessed as eligible for provision of safe usable bathing, toileting and washing facilities, and not providing wheelchair access to disability related equipment for communication.
Three years ago I asked the Village Hall Committee to comply with the Disability Discrimination Act and provide wheelchair accessible toilet facilities behind the toilet door that had the wheelchair symbol on it. And asked for one of the two fire escape doors to have a ramp down the two steep steps. Two years ago the Parish Plan recommended the wheelchair accessible toilet and fire escape. Last year the Parish Council recommended the same to the Village Hall Committee. Nothing has happened. This year I am too tired to go to the Annual Parish Meeting and witness by my presence that they have done nothing.
Art Against Disablism
Last year I didn't join the local art class under the adult education provision, with a favourite artist teacher who I had known years ago, even though it was held in wheelchair accessible premises with toilet facilities and parking; because I needed practical assistance, reliable, guaranteed each week, and no volunteer service could guarantee that, and social services budget for social inclusion would not stretch from paying my PA for one session, to two sessions, of 'social inclusion' a week.
Definition and analysis of Disablism
It is illegal - Disablism - just like Sexism and Racism, but like those isms, it happens. Nothing more erudite than that I am afraid, here.
Disablism within Healthcare Systems
I had a bump on my forehead, a benign osteoma. Over twenty years it grew to being Big. Painful. Unsightly. Benign none the less. The Medics did not want to operate to remove it because I am a wheelchair user and that would be difficult for them on the in-patient ward. Yes, they said so, to my GP. The next reason the Medics gave for not wanting to operate on my benign osteoma was because I have Lupus. My GP had to be persuaded by me, and then be persuaded by me to tell the Medics, that I was well enough to not have Lupus related complications during or after the surgery, but I might not be in a few years time when the osteoma had grown through my skull into my brain. Best to do it now, don't you think ?
Education
One of the written-down reasons, taken from the officially approved list, that my Occupational Therapist gave the budget-deciders at County Hall, to persuade them to fund my assessed as eligible disabled facilities and adaptations, was that I would then be able to pursue further education and academic study.
No, I said to my OT, I have no intention of pursuing a recognised course of academic study. Been there, done it, got the certificate. Thank you but No Thank You, I am too old to jump through that particular hoop again. And, besides, its a Lie. The perfectly adequate and true reason is that I need access to disability related equipment for communication so that I can manage my life independently in my physical and cognitive disabilities. That is sufficient. There is no need to lie that I need it for an education.
Nonetheless, I would like to further my artistic education. But that is a different social services budget.
Employment
I have not been an employee since I took my Town Council employers to the Employment Tribunal in a case for constructive dismissal, disability discrimination and sexual harassment (not all by the same person !).
Example: Newly arrived new Boss: "You are very awkward, aren't you Sally."
"No, I am not awkward, I am disabled; I have Meniere's Syndrome, and that is very awkward for you."
Experiences through Family and Friends
Scene: I have explained to my Mother, on the phone, why I cannot do what she wants me to do.
Mother to Sally: "You are very selfish Sally."
Sally: "No Mother, I am not selfish, but I am ill and I am disabled."
Mother: "Well, what's wrong with you ?"
Sally: "There is nothing wrong with me; as I have explained, I have a disease, Lupus, Systemic Lupus Erythematosus."
Mother: "You can't expect me to remember all that."
Sally: "I will write it down for you, then you will have no excuse to forget."
Later, I send her an information card from the Lupus Association.
Mother: "What did you do to deserve that then, IF it IS as bad as you say it is ?"
(Was that a double or a triple insult in one sentence?)
Sally: "Nothing." Puts phone down.
Weeks later, she has softened a bit:
Mother: "Well, where did you get it from ? You didn't get it from me and there was nothing wrong with your Dad."
Sally: "Well, you are my parents, so it must have been the combination of your genes that has resulted in my genetic disposition to Lupus."
Mother: "Hmm." (in a huff)
(I swear this is verbatim)
General Thoughts on Disablism
It is something to focus energy on, to fight, to blog against, to feel we do have some chance of changing it by challenging it, here.
Impairment Specific Prejudice
"You DO look well."
"But, you look well."
"Aren't you looking well."
"You're looking so well."
"You must be feeling much better."
"You don't look ill."
People with Lupus look well. Fact. So well in fact, that in 2000 the Lupus Association published 'A GP Guide to Lupus' (115 pages) which was launched at Westminster and sent to every GP surgery in the country. This because so many Lupus patients (90% of whom are female) were not being diagnosed early enough to prevent permanent skin, joint, soft tissue or major organ damage. Because they look well, their doctors were not taking their reports of ill health seriously. From the book's introduction: "... such patients are frequently categorised as hypochondriacs."
The result for me: a wheelchair, because for four years my male GP had not taken me or my symptoms seriously, stating: " ... you have a neurotic need to be ill."
Being in a wheelchair brings its own specific prejudice:
I am bowling along in the shopping centre, dressed smartly as I usually am when I go out into what passes for civilisation. I have made the mistake of going out in public during the school and college holiday. Two teenage girls, attractive, well dressed, not Chavs, ever so slightly moved further away from the approaching me-in-a-wheelchair than is necessary. As I get closer they look down on me and, as one, they frown, crinkle their noses, shake their heads slightly and ... I can't get the words right, to describe what is unmistakably their intention to inform me: I am a smell, I am an affront to their youth, to their right to not be exposed to disease, I should not be out in public, and worse; I am female so I have an extra duty not to be seen in public; I have female parts that should not be seen in a cripple, not be associated with disease, it is an insult to attractive females and I have no right to associate in peoples' minds, disease with breasts and a womb. I am an abomination.
No, just Me, in a wheelchair. I was not harmed by their attitude, but I seethe still.
I used the Goldfish's categories for inspiration:
Abortion and Euthanasia
I am old enough to have been spared abortion. If I had been an impaired foetus, technology had not progressed to looking at a foetus in the womb and so society, then, had not progressed to deciding on its economic viability.
I will be old, sooner or later, depending on my degree of impairment. I hope that society has not progressed, by that time, to economic euthanasia.
Access Issues (outside employment)
Nine years ago I was given a NHS manual attendant wheelchair (I cannot self propel) but the NHS did not provide an attendant to push me. I stayed at home, waiting for volunteers. Six years ago I requested, but was refused, a NHS electric wheelchair. Five years ago I had begged enough charity to buy one.
Then I asked the District Council and the County Council social services for wheelchair access into my home. Four years ago I asked for wheelchair access inside and around my home and the NHS assessed me as eligible for an electric wheelchair but, as I had an outdoor electric wheelchair, with their funding I had to promise to only use their funded wheelchair indoors. They would fund 20% of the cost. Two years ago (after I had waited two years) the County Council social services assessed me as eligible for wheelchair access into the house and into principal downstairs rooms.
Last week I asked the Local Government Ombudsman to look into why the County Council were still preventing me (and wheelchair using friends) from having wheelchair access into my home; preventing me bringing my outdoor wheelchair indoors for storage and charging; preventing me having the use of an indoor electric wheelchair; preventing wheelchair access to principal downstairs rooms; preventing assessed as eligible for provision of safe usable bathing, toileting and washing facilities, and not providing wheelchair access to disability related equipment for communication.
Three years ago I asked the Village Hall Committee to comply with the Disability Discrimination Act and provide wheelchair accessible toilet facilities behind the toilet door that had the wheelchair symbol on it. And asked for one of the two fire escape doors to have a ramp down the two steep steps. Two years ago the Parish Plan recommended the wheelchair accessible toilet and fire escape. Last year the Parish Council recommended the same to the Village Hall Committee. Nothing has happened. This year I am too tired to go to the Annual Parish Meeting and witness by my presence that they have done nothing.
Art Against Disablism
Last year I didn't join the local art class under the adult education provision, with a favourite artist teacher who I had known years ago, even though it was held in wheelchair accessible premises with toilet facilities and parking; because I needed practical assistance, reliable, guaranteed each week, and no volunteer service could guarantee that, and social services budget for social inclusion would not stretch from paying my PA for one session, to two sessions, of 'social inclusion' a week.
Definition and analysis of Disablism
It is illegal - Disablism - just like Sexism and Racism, but like those isms, it happens. Nothing more erudite than that I am afraid, here.
Disablism within Healthcare Systems
I had a bump on my forehead, a benign osteoma. Over twenty years it grew to being Big. Painful. Unsightly. Benign none the less. The Medics did not want to operate to remove it because I am a wheelchair user and that would be difficult for them on the in-patient ward. Yes, they said so, to my GP. The next reason the Medics gave for not wanting to operate on my benign osteoma was because I have Lupus. My GP had to be persuaded by me, and then be persuaded by me to tell the Medics, that I was well enough to not have Lupus related complications during or after the surgery, but I might not be in a few years time when the osteoma had grown through my skull into my brain. Best to do it now, don't you think ?
Education
One of the written-down reasons, taken from the officially approved list, that my Occupational Therapist gave the budget-deciders at County Hall, to persuade them to fund my assessed as eligible disabled facilities and adaptations, was that I would then be able to pursue further education and academic study.
No, I said to my OT, I have no intention of pursuing a recognised course of academic study. Been there, done it, got the certificate. Thank you but No Thank You, I am too old to jump through that particular hoop again. And, besides, its a Lie. The perfectly adequate and true reason is that I need access to disability related equipment for communication so that I can manage my life independently in my physical and cognitive disabilities. That is sufficient. There is no need to lie that I need it for an education.
Nonetheless, I would like to further my artistic education. But that is a different social services budget.
Employment
I have not been an employee since I took my Town Council employers to the Employment Tribunal in a case for constructive dismissal, disability discrimination and sexual harassment (not all by the same person !).
Example: Newly arrived new Boss: "You are very awkward, aren't you Sally."
"No, I am not awkward, I am disabled; I have Meniere's Syndrome, and that is very awkward for you."
Experiences through Family and Friends
Scene: I have explained to my Mother, on the phone, why I cannot do what she wants me to do.
Mother to Sally: "You are very selfish Sally."
Sally: "No Mother, I am not selfish, but I am ill and I am disabled."
Mother: "Well, what's wrong with you ?"
Sally: "There is nothing wrong with me; as I have explained, I have a disease, Lupus, Systemic Lupus Erythematosus."
Mother: "You can't expect me to remember all that."
Sally: "I will write it down for you, then you will have no excuse to forget."
Later, I send her an information card from the Lupus Association.
Mother: "What did you do to deserve that then, IF it IS as bad as you say it is ?"
(Was that a double or a triple insult in one sentence?)
Sally: "Nothing." Puts phone down.
Weeks later, she has softened a bit:
Mother: "Well, where did you get it from ? You didn't get it from me and there was nothing wrong with your Dad."
Sally: "Well, you are my parents, so it must have been the combination of your genes that has resulted in my genetic disposition to Lupus."
Mother: "Hmm." (in a huff)
(I swear this is verbatim)
General Thoughts on Disablism
It is something to focus energy on, to fight, to blog against, to feel we do have some chance of changing it by challenging it, here.
Impairment Specific Prejudice
"You DO look well."
"But, you look well."
"Aren't you looking well."
"You're looking so well."
"You must be feeling much better."
"You don't look ill."
People with Lupus look well. Fact. So well in fact, that in 2000 the Lupus Association published 'A GP Guide to Lupus' (115 pages) which was launched at Westminster and sent to every GP surgery in the country. This because so many Lupus patients (90% of whom are female) were not being diagnosed early enough to prevent permanent skin, joint, soft tissue or major organ damage. Because they look well, their doctors were not taking their reports of ill health seriously. From the book's introduction: "... such patients are frequently categorised as hypochondriacs."
The result for me: a wheelchair, because for four years my male GP had not taken me or my symptoms seriously, stating: " ... you have a neurotic need to be ill."
Being in a wheelchair brings its own specific prejudice:
I am bowling along in the shopping centre, dressed smartly as I usually am when I go out into what passes for civilisation. I have made the mistake of going out in public during the school and college holiday. Two teenage girls, attractive, well dressed, not Chavs, ever so slightly moved further away from the approaching me-in-a-wheelchair than is necessary. As I get closer they look down on me and, as one, they frown, crinkle their noses, shake their heads slightly and ... I can't get the words right, to describe what is unmistakably their intention to inform me: I am a smell, I am an affront to their youth, to their right to not be exposed to disease, I should not be out in public, and worse; I am female so I have an extra duty not to be seen in public; I have female parts that should not be seen in a cripple, not be associated with disease, it is an insult to attractive females and I have no right to associate in peoples' minds, disease with breasts and a womb. I am an abomination.
No, just Me, in a wheelchair. I was not harmed by their attitude, but I seethe still.
Love and Sex
Yes please. Oh, sorry, general Love - yes I get lots; from my Bump, and special friends, who know I love and appreciate them. And blogging friends, who I hope know that I love them, especially as by their dedication to reading my blog they know me as well as, probably better, than most of my friends. Sex. That would be nice.
None English Blogs
Mohebat once visited my blog leaving a one word comment of praise. At the time I followed the link (no longer functional) to Her/His blog, but I think Mohebat was Iranian, so without a translation facility, all I could relate to was this exquisite picture on the page, which expressed a lot of what today is about. S/he has not visited since.
Parenting
For me it is all about my Bump no longer needing parenting. That is the hardest part yet of being a parent of an independent adult with an impairment; who no longer thinks of herself as disabled and, therefore, nor must I.
Poetry Against Disablism
Written three years ago when brain fatigued and cognitively dysfuncked, not able to get the wheelchair indoors, physically exhausted, depressed.
Lupus loop: zombie shti, cognitive dysfunct.
No laptop, no ramped assent, no wheelchair,
No buggy round the bend to the u-bend,
No lift to the stars in the stair lift.
Sleek quiet soft seat outside in the jeep,
Inside, stumpy feet in sheep-skin standing,
leaning, trying.
No DFG, no TLC. No crying.
Quotes Against Disablism
One from every blog appearing on BADD would be good.
The Language of Disablism
We witness against it.
posted by Sally at 10:40 pm
6 Comments:
I love the 'coming unstuck' picture - it's now my desktop wallpaper. As to 'what happened?' - I grew bored of myself. I read my blog through and thought what a self-obsessed, vain, superficial, pathetic whinger, so I deleted it. Perhaps I'll start another when I like myself again.
Lily, your presence will be missed, but I would like to think you are still lurking, and commenting !
Have you read BADD ? Someone asked why there are no/few BADD entries from non-disabled ... there's an invitation ?
Anyway, you were never superficial and not liking ouselves, as I have said before, has roots in how we were mothered, so do what you want to do when you want to do it.
This non-disabled person was simply a bit too slow this year... I was overtaken by wheelchair users with electric wheelchairs, super fast zooming along sports wheelchairs and and people with greyhounds as guide dogs, you know.
Thanks for that BADD post, Sally. It is good you were able to retrieve it from wherever. It covered so many aspects and was very thought provoking.
Thanks BMone, we know you were not 'slow' just busy or not able to connect with the www. I do, however, admit to gearing up my wheelchair to speed 5 (about 4 miles per hour) to zoom past people, just because I can !
Sally, This is an amazing post! What a great portrayal of disablism as it exists throughout one's life. If only affected an area or two, it would be so much easier to deal with, but instead it gets us everywhere. Thanks for this post.
And sorry I'm so late to the game-I'm only just starting to read blogs again.
Spotted Elle - you are very welcome, and I admire your determination. I have been holding in my mind these last few days your picture of the little elle.
Thank you for your comments. Where would I be without blogging and blogging friends !
Lost.
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