Ann Macfarlane OBE — a life that changed lives

Ann Macfarlane has died at the age of 87. She was the oldest disability activist I knew, and one of the wisest.

Ann was born in 1939, into a world where disabled people were largely invisible — segregated in institutions, or kept at home with no real means to join in. She spent years in hospital wards and care homes. Through sheer determination, she made her way out: to a job, to a home of her own, and onto the long road to independent living.

She then spent the rest of her life clearing that road for others.

In 1987, Ann and Baroness Jane Campbell sat down with Kingston's Director of Social Services and asked, simply, to be allowed to run their own lives. Out of that came the Kingston independent living scheme and the campaigning that helped put direct payments onto the statute books in 1996. If you, or someone you support, has ever managed their own care, that thread runs back to Ann. She was honoured with an MBE and later an OBE, though the honours were never the point. The point was the work.

Here is what I keep coming back to.

The last time I saw her was this past winter, at a Not Dead Yet UK demonstration outside the Houses of Parliament against the Leadbeater Bill on assisted dying. It was freezing. And there was Ann. Of course, she was. No fuss, no announcement — just there, where it mattered, as she always had been.

That was Ann. She got on with things quietly, without fanfare, and was admired all the more for it.

As a member of Not Dead Yet UK, I know our work goes on without her now. But it goes on because of people like her — people who decided, decades ago, that disabled lives were worth fighting for, and never stopped.

Thank you for everything, Ann.

Phil Friend, Convenor, Not Dead Yet UK