Independence has been hailed as the pinnacle of achievement for people with disabilities. The more you could do for yourself the more successfully you could integrate into society. If you could do everything for yourself, you might just be accepted as normal, or at least as not too disabled. You could assimilate. That was the promise, anyway.
That was the 80s and it was every man for himself – women too could give it a go if they were prepared to betray their femininity and their familial obligations. You don’t have to scratch the surface too hard to find that this attitude is still all too pervasive in our culture, but that’s another blog post. So, for people with disabilities, it was a case of having to deal with a multitude of barriers in a society that wasn’t the slightest bit interested in equality of opportunity and was very interested in how much money you could make, or at least in minimising how much you might take.
The message came through loud and clear: to need help was not only weak, you were a burden. It meant that you had not properly assimilated into what amounted to one of the cruelest paradoxes of 20th century politics: the society of individuals. If you could not exist on your own, society no longer had any use for you.
As a result of the Great Recession, governments are, once again, picking off their most vulnerable citizens and shining a light on those who are not performing. Society has once again become a large group of disparate individuals and those of us who need help are once again being made to feel like a burden. We are in the spotlight. We are being blamed for something many of us could have had no part in, even if we’d wanted to. Capitalism failed and we are being duly punished.
Is it any wonder I struggled to ask for help when I needed it?
I took some convincing to get home help. Eventually I accepted that it was not just necessary but a good thing. The person who convinced me put it this way: If you let someone else do the mundane jobs around the house, things that really don’t benefit you to do yourself, you might have the time and energy to do the things you want to do. You will be able to live your life. He didn’t use those exact words but that was the sentiment and it resonated with me instantly. I realised too that it was not my fault that I needed help and that it is not a weakness to ask for help. To ask for help is a strength. It shows strength of character. It illustrates that one is able to manage expectations and to embrace their own reality. It also shows maturity and an understanding that everyone needs help sometimes.
Interdependence is a word I am hearing a lot now. It has largely replaced the idea of independence in the discourse around disability. Disability politics has struggled for a long time to find a politically and academically sound discourse. There are a number of reasons for this, not least of which is the relative infancy of the movement and the diversity of its members, which accounts for its disparate ideas and the slow rate of change. There have been a great many words and concepts that have come and gone. Interdependence is, I hope, here to stay.
Interdependence is the idea that we should all depend not just on ourselves but on each other to get by. It embraces the notion that everyone needs help. It also promotes the idea that everybody has something to offer and that asking for help is not only acceptable but desirable and is an acknowledgment that one can give something back in return, not necessarily to the same person but certainly to others and to society. That’s society, the collective noun and not society, the Conservative notion of individuals who happen to be roughly in the same place at the same time.
It took me a long time to ask for help. Eventually I was nudged. It has changed my life in such a good way. I started out with more help than I needed – Oh, my! How times have changed – I have adjusted my time allocation to a compromise so that I still have to do quite a bit but essential tasks are done and I never go more than a few days without help. I have found a couple of people who do a great job and who I think understand my needs well. They give me my privacy and leave me with my dignity intact. Privacy and dignity are two concepts that one really learns to value and appreciate when living with disabilities. It is certainly possible to retain both. There just has to be mutual understanding and respect on both sides.
So, I have embraced the idea of interdependence with regard to help in a formal sense, where that help is funded. What though of help from those who are not paid to do so? Reads to me like a reasonable topic for my next blog post.
As always, thanks for reading. Please leave a comment or share your own experiences below.