Why I Was Worried by the Assisted Dying Bill

Author: Wendy Perez

I was very pleased that the Assisted Dying Bill did not get passed in Parliament. I am a woman with learning disabilities and I was very angry when I heard about this Bill.

It was very dangerous. People with learning disabilities and their families know that in hospitals many decisions get made without people fully understanding their rights or being given the right information or treatment.

I have learnt myself the hard way that you need to stick up for yourself, ask questions and not just say ‘yes.’ Sometimes families, friends or supporters say ‘yes’ to doctors on your behalf when they shouldn’t. Sometimes you don’t get privacy and people you don’t trust are included in decisions. People need to talk to you directly, not behind your back, or as if you can’t understand.

There are lots of problems for people with learning disabilities in the hospital system. Some of these problems were described in Death by Indifference, which was published in 2007. Now, and in the past, there has been a lot of negligence in hospital. Sometimes doctors have ended the lives of people with learning disabilities, even without asking.

There are several reasons why doctors and other professionals may influence decisions in the wrong way:

1. Some people do not have spoken language, and important decisions get made by professionals, families or supporters, even when the person themselves would disagree. It is essential that the right communication system is in place.
2. Even when people do have spoken language they may not be listened to or respected. They cannot get their message across or are ignored and people do not take the time to find out how they really feel or trust what they say.
3. Some people, especially today, think that people with disabilities, especially people with learning disabilities cost the Government a lot of money. I’ve heard professionals say that important tests were a “waste of money” for people like me, people with disabilities. This is not true; people with disabilities bring more to the world than we ever take - in lots of different ways. But when the NHS and social care are being cut it is more likely that people will take matters into their own hands and end people’s lives earlier.
4. Some people think that people with disabilities do not have a good quality of life. This is pants. My life goes on like anyone else’s. I might need support some time - but I live life like anyone else.

We don’t need to be encouraging people to commit suicide or allowing doctors more power to end people’s lives.

People with learning disabilities need better healthcare, and more control over what happens. They need as much information as they can take, so they can make decisions, by themselves with or without support.

Doctors should have more training about giving information in the right way. They need to understand what each person or family needs themselves. Give them the right information and control over decisions and then work together.

Never forget that we are real people - don’t focus on the budget.

When our health is poor then it is an emotional time.

Listen and work together.

Respect us.

The publisher is the Centre for Welfare Reform.

Why I was worried by the Assisted Dying Bill © Wendy Perez 2015.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.