Your letters - April 2009

Living and dying with dignity

Penny Pepper’s response to the story of my mother, Dr Anne Turner (A short stay in clichéland, Disability Now March 2009) fails to make a crucial distinction between the lives of disabled people and those of the terminally ill.

Society’s response to disability should correctly be acceptance and adaptation. Our response to terminal illness should be to ease symptoms to the full extent possible, but ultimately to recognise that a natural death may cause unbearable suffering to some people.

At any moment in the progression of a terminal illness, a patient’s symptoms may appear superficially to be comparable with those of someone living with a chronic disability. When my mother had an assisted death at Dignitas in Switzerland, she was, as Penny points out, relatively able-bodied and would not have qualified for an assisted death under the legislation which Dignity in Dying proposes for the UK. Progressive Supranuclear Palsy (PSP) would ultimately have left her paralysed, unable to move any muscle in her body, and unable even to communicate with her carers.

At all stages in her future illness, my mother would have been experiencing a loss of capability.

This contrasts with disabled lives where, with the right help, people learn to cope with their impairment and often experience an increase in quality of life. There is no upside in terminal illness.

What I would like is to avoid the moral fudge whereby we will stand and watch someone starve and dehydrate themselves to death, because we are too cowardly to give them the personal freedom to end their own lives.

Suicide is not a solution to impairment; it should not even be our first response to terminal illness. But in the restricted circumstances of the final stages of a terminal illness, and subject to safeguards, I believe it should be an available choice in a compassionate and civilised society.
Edward Turner, London W1

Penny Pepper is wrong in thinking that euthanasia is explicitly or implicitly connected to disability. Euthanasia is about painlessly ending life and thereby sparing a person from incurable pain and suffering. It is about choice, the choice to decide where and when to end life and by exercising that choice an individual can die with dignity in a time and place of their choosing.

The discussion for disabled people is that we do not have equal access to suicide. If I wished to jump on an aeroplane and zoom off to Switzerland for a short, one way visit, I would need the help of carers. These carers would be acting illegally if they were to help me. Effectively my access to suicide is restricted simply because of my disability; for this very reason I would have thought that many disabled people would support legalising euthanasia.
Philip Tribe, by email

Fessing up to blue badge bay abuse

I must reply to Michael Higham and Robert Taylor (Your views, Disability Now January 2009).

I look fit and healthy, but my situation is that I have an unnamed muscle and nerve illness that my consultant describes as “a sub-set of muscular dystrophy” which leaves me in constant pain and unable to use my muscles for any length of time without being in agony.

I cannot use public transport because I MUST have a seat for any journey, because trying to stand on a swaying vehicle rapidly results in agony. I also find most public transport seats unbearably uncomfortable.

Now I think that means I am disabled, but because I can walk to the nearest bus-stop I am considered to be too fit to need a blue badge.

So how do I go shopping? My choice of vehicle is a Toyota Hi-Lux 4x4 pickup truck (which I like because the seat is at bum height when I stand next to it, so no painful bending and heaving to get in and out).

I park in a disabled bay because they are close to the entrance to the supermarket.

If I parked at any distance from the entrance I would have to use a lot of my “walking ration” simply getting to the entrance and back to my truck, leaving me insufficient to do my shopping.

So if you have seen an apparently fit pickup driver parking in a disabled bay without showing a blue badge, then it may have been me.
David Girling, by email

Safety at the wheel

I read Spencer Arnott’s letter (Your views, Disability Now, March 2009) in which he questions the ability of people with dexterity problems to drive safely.

Whilst Mr Arnott is clearly right in that the safety of other road users is of paramount importance and must take precedence over a person’s liberty to drive, the suggestion that anyone with a dexterity problem cannot drive safely is patent nonsense!

I suffer from athetoid cerebral palsy and cannot use coin machines or pick up any drink without spilling it all over and yet, like many of my friends with cerebral palsy, I have driven for 30 years without any untoward incident. Mr Arnott clearly doesn’t understand that the nature and capacities of people with conditions like cerebral palsy, and that people’s degree of control and dexterity, can vary dramatically depending on the task. Now it is freely acknowledged that many people with very complex disabilities, who were once considered unable to drive, can do so and do it safely!
Harold Sharpe JP., North Matlock, Derbyshire

Accessing the scene

As a woman who regularly goes out on the ‘gay scene’ in one northern city in particular, I am struck at how little is done to include or even facilitate for people who have disabilities.

In our city we have a number of gay bars and not one of them is fully accessible for people who use wheelchairs or need assistance to walk. There is no concept from the bar owners and managers that people may have additional needs and that they have a duty to ensure that their premises are accessible and, indeed, inclusive. In fact, the Disability Discrimination Act appears not to apply if you are LGBT and wish to access the mainstream scene.

This is something that I would like to change and I have compiled a short questionnaire (see link below). I would really appreciate it if as many people as possible could complete it, and give feedback about how you have found it when trying to access the commercial gay scene and what you would like to change. Please also feel free to leave your email address and I will contact you with future developments.

http://www.surveymonkey.com/s.aspx?sm=G9nFThVcU9Sk9rYyeYGqPQ_3d_3d
Sarah Carmody, by email

Commission omission

I am disappointed with the Human Rights Commission (News view, Disability Now, March 2009). While the head of the Commission makes statements endlessly about racism and sexism, hardly anything is ever said about disablism and ageism. The minister for disabled people is totally anonymous, serving time until the promotion comes along. The Government says it’s always looking to cut costs, well what about cutting these ineffective posts?
Danny Hudson, by email