The copyright of this article belongs to Penny Bould February June 2003, all rights reserved. Permission to re-post on the Internet for non-profit-making campaigning purposes provided that it is reproduced in full with my name as the author. All other rights reserved.

Ban “bedbound” and “wheelchair-bound”: negative words which encourage patronising discriminatory attitudes should be made as illegal as racist language.
Oppose the Patient (Assisted Dying) Bill 2003 NOW! Contact Peers
in the House of Lords and MPs

Disability Rights and Wrongs:

Valuing Disabled People’s Lives

Better off Dead or Not? 

As the Patient  (Assisted) Dying Bill goes through Parliament (with its Second Reading in the Lords on Friday 5^th June 2003) West Midlands journalist, broadcaster, counsellor & disability civil rights campaigner electric wheelchair user Penny Bould, setting up a new group called “M.E. Wheelers”, who has experienced paralysis and being unable to speak or open her eyes, calls for the nation to oppose the Bill and reassess the real value of disabled people’s lives.

Millions of people in the UK who are or who ever will be severely disabled or seriously long term ill should be afraid, very afraid.

That’s because there is a danger that some doctors and others who do not recognise the value of disabled people’s lives could be involved in deciding you do not have the right to live by agreeing that someone in a vulnerable position’s life is over, you are burden so why not be assisted to commit suicide.

The Patient (Assisted) Dying Bill, may be well intended but disablist compassion, based on values of life which exclude the severely disabled and seriously ill can tell society your life is worthless and kill you. 

The Bill provides for no compulsory professional counselling and no compulsory demonstration of the possibilities of positive lives for disabled people.  So when the Bill talks about an attending physician informing the patient of alternatives, it only specifies palliative medical care and hospice care.

Before anyone is asked to complete an “Expression of Wishes in Healthcare” form, featuring I assume at which point you want to be denied medical treatment and “allowed to die” or  the Patient (Assisted Dying) Act Declaration, there should be an individual as well as public education campaign about the positive and rewarding lives many very severely disabled people enjoy.

I and millions of other disabled people and anyone on the planet who may become disabled are concerned, or should be, about the negative  always “better off dead” case for suicide, assisted suicide, euthanasia and do not resuscitate orders.

The Bill permits one attending physician to help the patient to die. What about the murderous Dr Death Shipmans of this world then? There may be a “Monitoring Commission” set up under the Bill, but that sounds like monitoring after rather than before the killing. We don’t just want to spot serial killers.

Under the Bill one witness to the declaration must be a practicing solicitor. But the other could be a personal assistant carer or employee at home as the Bill only specifies that someone who could benefit (directly) from the patient’s estate or is a partner or relative or employee or owner or manager of a care home cannot be the other witness.

Speaking as a former law court reporter, seems to me there is scope for conspiracies here. Even if you agree with the principle of assisted suicide, this Bill fails to be thorough enough.

The Bill is clearly written from the perspective of a medical model of disability. It ignores the way in which disabled and seriously ill people face discrimination, attitudinal and physical barriers to taking part in life.

Buildings today may not have signs saying “No blacks” but plenty effectively say: “No wheelchair users and others with mobility impairments and learning disabilities”.

Diagnosed with M.E. in June 1996, I was formerly very physically active.

Although I now walk short distances, I have been an electric wheelchair user since soon after collapsing in a sore heap with agonising muscle and head-pain reporting on the 1997 general election for the Press Association.

An ex broadcast news reporter, producer presenter and former M.D. of my own news, PR, marketing and training agency with a previous penchant for trying to water ski, daily workouts and hours of nightclub dancing, I have experienced a dramatic change in my physical abilities since getting the severe multi-system painful neuroendocrine immune disease Myalgic Encephalomyelitis.

At times I have been in terrible pain, unable to write my name, swallow solid food or experienced episodes of total body paralysis apart from shallow breathing and been unable to move, open my eyes or speak other than in numbers of “mmmms”, i.e., one for yes, two for no and longer ones to denote ask me another question etc.,

But even then I have been quite sure that I can be of value in society, for example by sharing wisdom, by listening to someone and have pleasures worth enjoying, such as wonderful sounds and smells and even laughing despite my jaw being locked in muscular spasm at the time.

We need a major education programme to get the message across that most disabled people can get value from life and often give value to the lives of others.

And if you want to talk about the bottom line, if you are or become more severely disabled than I am, there are now loos which can wash and dry you, rather more dignified than having someone do it for you.

I am fortunate in that I have the love and encouragement of friends and family,  a nice albeit small home and have various outlets as a creative writer, very occasional singer, comic and performance poet.

When I saw a more severely disabled woman, namely Mrs Pretty on TV, with children dancing in front of her and making her smile and her face light up,  I felt it was ironic that she reportedly wanted to commit suicide in part because her life was “unfulfilling”.

Ban “bedbound” and “wheelchair-bound”:

negative words which encourage patronising discriminatory attitudes should be made as illegal as racist language.

Most disability civil rights campaigners find terms such as “confined to a wheelchair” and “bedbound” negative, disablist and offensive. They should be banned from the language.

My wheelchair is my liberating transport: I have a sticker saying “SHORT VEHICLE” on the side and a large loud hooter so hearing people might move out of the way, as I get sick of saying “excuse me” and avoiding getting elbowed in the head by people unaware of my presence.

Let’s say “no!” to  “bedbound” and more OK to bed-based, “No!” to home-bound and yes say to home based.

Some disabled people do need supporting straps but mostly even people who are physically strapped to their beds and even when movement is only possible with a hoist, they are lifted out sometimes.

When I have been occasionally strapped onto a stretcher during paralysis episodes I just regard them as a safety precaution, not being “bound”.

The “quality of life argument” being used is usually from an entirely unimaginative non-disabled person’s prejudiced perspective.

Although I am disabled I know that I have a much more rewarding lifestyle than many who are “able bodied”.

Being disabled does not have to be “dismal and disastrous”.

We must stop those trying to convince everyone that disability means the end of the world, a life not worth living and that it we would all be “better off dead”.

We are still surrounded by mostly negative ideas about disability so it is hardly surprising that disabled people’s lives are often not valued.

Some research indicates that on average a human needs to have a causal relationship demonstrated 31 times before they really believe it and act upon it. Can many non-disabled people say you have seen 31 positive images of disabled people which do not involve charity and pity?

Going into shops is often entertaining for someone who is disabled and a comic. I get asked questions like recently in a town where I had been to a funeral: “Are you a road accident or?”

I replied mockingly (although she failed to notice the humour):  “I am an or …” Her face full of abject pity she said: “Oh, it must be awful for you dear…”

“Does your view that my entire life must be awful and by implication worthless, affect what I can buy in this shop?” I enquired. “Do you really need to know the medical cause of my disabilities? Do you think I want to come out and have you say such negative things to me? Does it occur to you that I’d sooner hear you say: “That blue blouse really suits you madam, we have a beautiful dress in that colour?“

On a train minding my own business, a man came up to me and grabbed my arm, painfully hard and told the whole carriage: “It must be terrible for you.”

A minibus driver, at a festival of disability art where I was the comic poet and compere for a session, totally out of the blue asked me as I got in via the hydraulic lift: “Do you think about ending it all?” Gee thanks for making my day you dear driver, do you?!

A delivery man I had never met before was bringing a chair and set of shelves to my home. After saying hello and my explaining where I’d like him to put the furniture he asked me: “What is your disability?” I said: “Ah, would you like to share your medical history with me? Does knowing the exact nature of my disability affect your ability to place the chair and shelving where I am asking you to put them?”

He replied: “If people don’t tell you what their disability is you don’t know errr, how to help them.”

My response: “I don’t need any help from you right now other than to place the items in their locations. Did it occur to you that you might just be being inquisitive for no real purpose and that your question is intrusive and a waste of my time and energy? Did it occur to you that I may be tired of explaining what my disability is, or what medically caused it, especially to total strangers and that I would rather use my precious time and energy for other things?”

As a journalist I am naturally curious so I understand people’s curiosity.

But it is as if many people cannot relate to a disabled person before they know why they are disabled. I confess I have asked other disabled people about their disability sometimes, but it’s not been the very first question I have asked them and hopefully I have mostly managed to ask it in a non-negative way.

Now I usually wait for the disabled person to tell me, if and when they think it is appropriate and it is often after I have told them at some point in the conversation that I live with severe M.E.

I tell people I have M.E. for campaigning reasons - having M.E. is different to some disabilities in that too many people are still unaware that M.E. can be so disabling and I point out that many people living with M.E. are much more severely affected than I am, including those fed by tube.

(At least we finally have more government recognition and a little action in progress, with the investment of £8.5 million for “centres of excellence” in treating the condition. Shame on past governments that some have meanwhile deteriorated and died in part for lack of the right treatment.)

Whilst I respect the right of almost anyone to choose to die and how and when to do so providing it does not cause unreasonable harm to others, we must put an end to the notion that disability automatically means you would be better off dead, even if you have less than six months to live.

To achieve a better view of disabled people’s lives relatively quickly would involve a radical nationwide education programme. As the former Editor and PRO (1978-1980) of the low-budgeted rather un-positively titled QUANGO National Centre for Information and Advice on Educational Disadvantage, which was closed in a national QUANGO purge, I am not optimistic about this happening.

Most disabled people want to have the right to live in hope, as independently as possible, and to be respected not pitied.  

Trained counsellor (university certificated) Penny Bould is the European Union Breaking Barriers Award UK Certificate winner and a keynote speaker on topics such as disability discrimination. She is an experienced disability awareness trainer and auditor, founder of a new group called M.E. Wheelers and formerly on the board of a major campaigning charity employing 31 staff run by disabled people.

She occasionally writes for media including Disability Times and Disability Arts in London magazine. She appeared in the Disability Rights Commission movie short “Talk” and as an expert on disability issues in a Channel 4 documentary critiquing the controversial movie “The Idiots” by Lars von Trier, which focussed on non-disabled actors pretending to be disabled and society’s reaction to them.