I've been a campaigner for most of my life. I've not been alone. I've worked with other disabled people and great allies in parliament and elsewhere. Mostly, what we've wanted for disabled people has been almost universally applauded: better access, more support, equal rights. Opposition came from those holding the purse strings but we kept badgering away, arguing that equality for disabled people was good for everyone in society. By strength in numbers we scored notable victories, such as the Disability Discrimination Act. The wider public accepted that it was wrong for disabled people to receive inferior treatment.
Disabled people are still campaigning but this time we don't want change. We're united in wanting to keep things the same. How does one argue for the status quo? Chanting, "What to de want?" "No change", "When do we want it?", "Always" seems absurd.
Why bother at all? Because this could be the most important campaign of all, truly a matter of life and death.
Disabled and terminally ill people have had to deal with fear, prejudice and discrimination since the beginning of time. Our lives have been devalued by statements such as "he/she'd be better off dead". In recent years, calls for a change to the law prohibiting assisted suicide have grown louder and more frequent. They capitalise on fear. Fear of pain, fear of loss of dignity, fear of being a burden. And, yes, fear of witnessing those fears being felt by those we know and love. The solution offered to the fear of disability and illness is final: suicide.
Yet suicide is not well thought of in our society. It is "committed" by the mentally ill and those unable to face the future. In both cases, society does all that it can to prevent suicidal thoughts being enacted. Life is too precious to be solely entrusted to individual action. That society is willing to protect us, even from ourselves in times of personal crisis, defines our – and its – humanity.
However, those seeking a change to the law on assisted suicide say such ideals have no place when considering severely disabled and terminally ill people. Such lives, it seems, are not so precious: ending them prematurely should be a matter of individual choice. Perversely, if you can take your own life without assistance, society generally strives to protect you; but, if assistance to die is needed, they argue, it should be provided. The option to choose the time of one's death is to be reserved for those for whom assistance is required.
No equality there. Yet many see this as irrefutably logical and compassionate.
It was the realisation that the majority of disabled and terminally ill people were not being heard in this debate that led to the formation of Not Dead Yet UK. We joined with other groups in opposing the two most recent attempts to change the law. In each case the House of Lords was decisive in rejecting calls for assisted suicide. However, the euthanasia campaigners have vowed to try again in the current parliament.
If they can make it legal for the life of a single person to be prematurely ended, they will then seek to broaden the criteria. Once early death becomes an "option", it will gain a respectability that will erode the resolve of many people experiencing personal difficulties. Not only will it enter our heads, it will also enter the heads of our families and friends, those who provide us with health and social care support and, ultimately, those holding the purse strings.
How much more convenient for all if turkeys see voting for Christmas as exercising personal choice. No wonder disabled and terminally ill people are fearful of all attempts to weaken the current law. For any change would fundamentally alter not only how we are seen but also how we are treated and the care that we receive.
Campaigning to keep things as they are, to keep us safe, is not easy to do or explain. But we have our chant, "Nothing about us, without us". Our lives must not be given away without our resistance being heard. Indeed, Resistance is the name of the campaign we are launching today. We have a short, five-point charter we want all MPs to sign. It calls on them to listen to disabled and terminally ill people in their constituencies who fear any change to the current law. We know what it is to be close to death. We want help to live, not help to die.
