Ironing out the rough spots

Disability activist Nasa Begum, who died in her sleep on 24 May at her home in East London aged 47, was a role model for and inspiration to thousands of disabled people and their friends and families. Ju Gosling knew her and pays this tribute

For those of us whose lives are governed by social services, Nasa was renowned as the person who persuaded Newham’s “Panel” that ironing is, despite all past rulings to the contrary, a legitimate support need. She achieved this by confronting them in person to demand to know where she could buy work clothes that did not require ironing.

For those of us who shrink from using public transport, Nasa was the person who not only traversed London by bus and tube, but also travelled the globe unaccompanied. Nasa took a unique approach to her wheelchair batteries running down, simply asking – and always getting – the nearest owner of a power supply to help her.

Most famously, in Paris for her 40th birthday, she hooked up in the Audi showroom.

As an adventurer, Nasa roamed much further afield too, even obtaining her doctor’s reluctant permission to go skydiving in Australia. (More recently, on holiday with a friend in Egypt, she dismissed the suggestion that they try a hot air balloon as being “too boring”.)

When British Airways denied Nasa access to the plane seat she had booked home from a trip to India, she enlisted the help of the BBC’s Dominic Littlewood. He helped her prove conclusively and publicly that disabled people have the right to travel unaccompanied, and Nasa received a free long-distance ticket as compensation.

In her professional life Nasa was equally impressive, most recently securing the rights of user-led organizations within her work as principal adviser to the Social Care Institute for Excellence. She also contributed significantly to the fact that the UN Convention on the Rights of Disabled People now requires governments to collect data that is broken down by race, gender, and – as the UN quaintly puts it – “other” characteristics through raising awareness about the need to consider disabled people and black and minority ethnic people separately.

Despite all of this, Nasa was no “super crip”. She struggled, as the rest of us do, to make an unresponsive and bureaucratic system meet her support needs – and she recorded this struggle in letters to a wide variety of public authorities and figures. At the time of her death she was still struggling to have her social care, medical and work support needs met after a period of hospitalization, a struggle that undoubtedly took its toll.

I prefer to think about Nasa skydiving in heaven.