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“Stop trying to kill us off”

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Jane Campbell
The Guardian UK

Assisted dying is not a simple question of increasing choice for those
of us who live our lives close to death. It raises deep concerns about
how we are viewed by society and by ourselves.
I have a severe form of
spinal muscular atrophy, and require 24-hour assistance. Many people
who do not know me believe I would be “better off dead“.

Even more
“I couldn’t live like that.”

And some suggest that advances in genetic screening should be used to
enable parents to choose whether to have a child with disabilities.

Assisted Dying for the Terminally Ill, Lord Joffe’s private member’s
bill, which will be debated in the House of Lords feeds
into that lack of knowledge (some might call it ignorance, others
prejudice) by endorsing such views and legalising the killing of
terminally ill and disabled people.

The bill has the backing of the Voluntary Euthanasia Society (recently
renamed Dignity in Dying) and, according to their polls, the support
of the British public.

Yet it has failed to get the endorsement of a single organisation
of disabled people. Three major national charities have condemned
it, and leading campaigners have united under the banner of Not Dead Yet UK
to make the voice of disabled people heard. The very people the bill
is intended to help, the terminally ill and disabled, are frightened
by what it seeks to achieve.

Proponents of the bill claim that such criticisms are nonsense: the bill
is only intended to help that small minority who, in a similar situation
to me, do not think as I do but want to die. While conceding my right
to choose life,
Lord Joffe deliberately ignores the factors that
contribute to my choice. I benefit from excellent medical care. I live
in an adapted bungalow, and my local authority provides proper care support
that enables me to choose my own personal assistants. I am not dependent
on family and loved ones.

I love my good life. Lord Joffe, it appears, does not.

In 1999, as a member of the royal commission on long-term care for the
elderly, he issued a minority report with one other member, saying that
social care support should not be free at the point of delivery.

When I think about this, I shudder. To get an image of what it might be
like, one has only to think of Diane Pretty. Her life was very different
from mine and I would have liked to know the reasons for that. Did she
choose to live confined in a downstairs room rather than have adaptations
to her home or be rehoused? Did she want her husband to be her full-time
carer rather than accept more support from social services? Why was she
not fully confident about how her medical team would take care of her as
her illness progressed?

This is the third time that Lord Joffe has tried to get doctors to turn
their backs on the Hippocratic oath that requires them to “do no harm”
Following each rejection, he has returned with a more restrictive bill.
This time, we are told, the bill contains two important safeguards.
First, it will apply only to the “terminally ill” – the “disabled” are
excluded, so have nothing to fear. Second, the doctor will only be permitted
to prescribe the lethal dose. The patient must self-administer, so protecting
anyone who requests assistance to die but then has a change of heart.

A moment’s thought will show that these are not safeguards but devices to
silence objectors. The more restrictive the bill, the easier it is to
argue for its scope to be expanded once it has passed into law. None
of us will be safe.
Consider two patients lying side by side in hospital:
both ask their doctor to prescribe lethal medication. Although their
symptoms and prognosis are similar, one has a terminal illness whereas
the other is classed as disabled. One gets the drugs; the other does not.
Or will the second patient be reclassified? Consider the two patients again:
one has the strength to swallow the poison; the other does not, so it
remains by the bed. The message: “die now – before it’s too late.”

Legalising premature death as a treatment option will place pressures on
people near the end of their lives
. It will be the cheapest, quickest and
simplest option – all more attractive to health and social care services
than developing and providing expensive, and potentially long-term, services.
The relationship between care givers and receivers will be irrevocably damaged.

Fortunately, disabled and terminally ill people aren’t going to let that
happen without a fight.
Lord Ashley, the life-long campaigner for disabled
people, is introducing a bill on the right to independent living later
this year to guarantee the services that people like me need to participate
fully in society.

If Lord Joffe really wants to help, he should start
listening and stop trying to kill us off.

Jane Campbell MBE,
Chair of the Social Care Institute for Excellence from 2000 to 2006,

is a Disability Rights commissioner and Not Dead Yet UK
convener Livingwithdignity.info

The Guardian 05/09/06