This post is in related to a conversation I had on Twitter on Friday. I hope it explains things much better than I could have done in 140 characters and people find it of interest.

I saw a re-tweet about someone raising funds for Leonard Cheshire. While I applaud their efforts as doing something as tough as a triathlon is great, I had some concerns about who they were raising the money for.

Within the disability community, Leonard Cheshire is widely disliked for a number of reasons. The key one is their treatment of one of their residents, Doug Paulley. He challenged management about the way their policies were affecting residents in the home he was in. The management then proceeded to victimise him. An inquiry found that he had been subject to “institutional abuse” by senior managers. The story and related issues are covered by the paper Disability Now here and here.

I passed on the first of those links to the person who re-tweeted the fundraising tweet and the originator. I wasn’t trying to sabotage their significant efforts, just wanted to make them aware of the issues. After a brief conversation I was asked “how can WE be of help?” By ‘we’ I assume the twitterer was referring to non-disabled people. Below is how I think people can help.

Disability organisations are split into two types; ones for disabled people and ones of disabled people. Organisations for disabled people are usually larger, often national charities where disabled people have very little say in how they are run. They will have very few (if any) disabled trustees or senior managers and tend to be very paternalistic in their view point. Organisations of disabled people have disabled people at the core, driving decision making. They are often more locally based and smaller but are championing the needs and desires of disabled people directly. They promote inclusion and participation. The organisation I’m a trustee for only has disabled trustees and its member organisations all have to be controlled by disabled people too.

If non-disabled people want to support disabled people and increase their empowerment and inclusion, supporting organisations of disabled people rather than those for disabled people will be the most effective. If you’re asked to fund-raise for something disability related, ask the organisation what part disabled people play in steering it. If they can’t/won’t answer or say that they ‘consult’ rather than fully involve disabled people, then I’d suggest looking for a different charity to support.

This isn’t just an attack on Leonard Cheshire; other organisations are as bad, just not as high profile. I asked ASBAH (the Association for Spina Bifida (SB) and Hydrocephalus (H)) why only 7 out of their 20 trustees were disabled people. Six weeks later, I’m still waiting for a reply. Partly this will be due to ASBAH’s history. It was set up in 1966 to help the families of children with SB/H. It was mostly focused in that area as the life expectancy of someone with SB was quite low. Improvements in treatment and diagnosis since then have drastically increased life expectancy. As a result, there are more adults with SB than there were in 1966 and ASBAH needs to change its focus to reflect this emergent community.

Disabled people want inclusion and some control over their lives. Paternalistic approaches from charities, whilst genuine and well meaning, do little to further this. Supporting disabled people’s organisations is the most effective way to support genuine change.