Living with spinal muscular atrophy

Politician, Baroness Jane Campbell, 56, from Surbiton, has spinal muscular atrophy Type 1.2 (SMA). She has a number of physical limitations that are overcome with ventilation and tube feeding. Baroness Campbell has been described as ‘the most influential disabled person living in the country’ by the Disability News Service. She made history in 2012, when she won the right to have her personal assistant with her in the House of Lords Chamber, to read her speech when she became too physically tired to speak.

Among her achievements, Baroness Campbell set up the National Centre for Independent Living (NCIL) with long-term campaigner Frances Hasler. Together they lobbied Parliament for the legal right to a Direct Payment for disabled people to pay for their care, and won.

Baroness Campbell continues to break down the remaining barriers facing people today, through her parliamentary work as an Independent Member of the House of Lords. She is committed to fighting for change.

My disability has fuelled my determination to become a role model for other disabled people. I want people to think of me as a courageous politician with a great set of skills, not a courageous disabled person – there is a difference!

I simply fight for the right to be a full citizen with equal rights. There are still many barriers and discrimination faced by not only disabled people, but by women, people from minority groups, gay people, and those over 75. I fight alongside them for a right to equality, because we have many things in common – the main one being social stereotyping. We must fight together for an inclusive society. Together we are stronger, and a critical mass gives political power, and therefore the ability to change unequal practice. It’s about co-production, co-operation, shared ambition.

There have been lots of positive watershed moments for disabled people over the years, events that changed society’s perception of us – these will stay with me forever. One poignant moment was when I helped empower disabled people, (many who used wheelchairs and didn’t go out much) in their first act of civil defiance on Westminster Bridge. It was chaotic, we stopped the traffic, some were arrested! But, it brought about great change, forcing the modification of London buses to make them accessible for disabled people.

It was all very well making the environment and jobs more accessible but if disabled people couldn’t get out of bed at the time of their choosing it meant nothing. We needed choice and control over our care which gives us the ability to access the world. The National Centre for Independent Living (NCIL), which I was privileged to co-direct, was run entirely by disabled people for disabled people, to implement Independent Living by using Direct Payments to pay personal assistants. We started with nothing other than passion and an idea. On a shoestring, we established independent living schemes throughout the UK! Small enterprises, which informed and trained disabled people to become employers and take control of their lives.

I knew the campaign for Independent Living, by and for disabled people, would radically change society’s attitude towards us, especially those in the ‘caring sector’. We challenged traditional services based on ‘looking after’ and paternalism, and took control of our day-to-day lives. As a result, a new ‘Personalised Care’ system has emerged, centred around the person’s needs rather than fitting them into a standard service. This wouldn’t have happened without us. We showed that Independent living, defined by us, wasn’t about doing things on your own, but with support defined and directed by the individual.

Winning the fight for funding to keep disabled people independent and self-determining was indescribable. Disabled people’s lives, including mine, went from black and white into colour. I consider myself incredibly lucky to have been born at a time when disabled people became liberated. As our voice became stronger, people began to listen; they had to listen.

 

Once I had achieved my goals in the disability world, I decided it was time to take our message into the heart of the establishment. I worked for five years as the founding Chair of the Social Care Institute for Excellence, and then into the body of the beast – Parliament. I am an Independent crossbencher in the House of Lords. The biggest challenge of my life.

For the past seven years, I have turned all that I learnt from campaigning with disabled people for equality and human rights, into political persuasion. To be honest, there is little difference. The art of persuasion on your given area of expertise is the key to political success. So watch this space because there is more to come – no retirement for me!

Find out more about Muscular Dystrophy UK’s campaigning work. 

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