Over the many years I’ve been involved in the disability movement, I’ve interacted with many different advocacy groups. On the surface, all of these groups sound like they’re the real deal. Caring individuals who, for the most part, genuinely want to advocate for better care for the disabled or who want to provide that care.
Unfortunately, the failure rate of many of these groups is so high and only getting higher (more on that latter) that I am really beginning to wonder if they’re actually becoming obsolete.
The reasons behind these failures are numerous, and unfortunately, as old as humanity. A chronic lack of funding leading to advocacy group spending more time justifying their existence to funding agencies than actually doing the work they were created to do in the first place.
Petty politics where special snowflakes and professional victims spend more time driving wedges and consolidating power than they do building bridges and solving problems. Groups being founded around the cause of the disabled and then reinventing the wheel on how best to support them. Or perhaps, most tragically in my opinion, support using expensive technically obsolete solutions when entirely new possibilities exist within the new tech fields that can sometimes be bought ‘off the shelf’ at market value and be used with little or no customization.
If it sounds like I’m frustrated by the entire thing you’re correct. Time after time I feel as if I’ve been let down by these groups. As a volunteer watching a group’s receptionist fall asleep because there’s literally no activity due to how the group pigeonholed their mandate so narrowly that they effectively serve only themselves. I’ve been offered an honorarium for coming in to do volunteer work and doing absolutely nothing, because there was literally nothing to do. The expression on the person who offered me the money when I refused to take it has stayed with me to this day.
As an outside observer, I’ve seen groups who plans of support have changed as often as they personal, so that nothing ever really gets done because of all constant replanning. And, for me at least, the most rant worth situation has been when I’ve been threatened with the complete reorganization of my support by my service provider; asking an advocacy group for help and having them refuse to help me because the situation would have cost them to much ‘political capital’. I ask you, if you don’t use your political capital to help people your mandates says your supposed to help then why the hell do you have the capital in the first place!
And this is why I used part of the phrase ‘can’t see the forest for the trees’ as the title. So many of these groups have lost track of the very reason of why they exist in the first place; namely helping people. Maybe we need to look at putting cart before the horse. Getting the long-term funding for helping with the issues that the vast majority of people with disabilities (you know the old chestnuts: lack of employment opportunities, depression, lack of adequate housing, getting proper medical support, etc.) first and then start offering your services.
However, it may be too late. When I need information on a disability issue my first stop is Google, and Wikipedia, not an advocacy groups website, whose information, if they do have any, is often months if not years out of date.
I fought and won my war against getting my services reorganized because of the support of friends and family and the power of social media attracting the attention of ‘centres of influence’ who brought pressure to bear upon those who wanted to make that change. And that’s where the future of advocacy exits in my opinion. At the individual level attracting the masses attention long enough to bring pressure onto those in authority. Not with groups who say one thing but often lack the follow through.
