Michael’s speech on living with rare disease

One of the most powerful speakers we know is Michael Holden. We were all struck by his speech at Stormont for the launch of the Living Every Day with Rare Disease survey, and are delighted that he has published it on the DisabilityPride website.

Christine Collins, Michael Holden & Alison Wilson

Christine Collins, Michael Holden & Alison Wilson

Having a rare disease is a fight in itself, being excluded form society because access is seen as a ‘have to’ option rather than a ‘like to’ option. The built environment and public services are difficult to access, government don’t want to support us and they don’t want to improve the world for us so that we can support ourselves. It really is hard to win.

We have a rare disease often leading to a disability. We want to live our life in dignity not pigeon holed and placed on a conveyor to the grave.

I’m a husband, a father, a friend, an employer, a fighter, a tax payer, a worker, a Christian, I’m active, I’m Michael Holden, I’m alive and I’m planning to keep it that way.

Find out more about the Disability Pride parade and concert being held on 20th September 2014 here. Start planning your day out!

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