This is quite personal as it is about my brother James, who has Down syndrome. In terms of consent to me blogging about this – I have discussed it with him at length and he has no issue about being identified. We decided that it was important the fact that he is my brother stays in, because this isn’t a story about ‘other’.
Given what I have said above, I can see the contradiction/irony in that this post is, at least in part, about my brother’s lack of understanding of the word ‘consent’. Said in the right tone of voice and body language, my brother would say yes, or no, to almost anything; ‘you don’t want to do that do you?’, or ‘to be really independent* you need to….’, ‘now it’s your choice, but if I were you…’. He is totally and utterly committed and invested in the language of societal norms and government rhetoric – unsurprising when you consider that though much of the improvements gained for disabled people have been led (quite rightly so) from the front by people with physical impairments, the steps for learning disabled adults have been half hearted and almost entirely state-orchestrated.
Often I hear my brother and his friends say things like ‘real men drink beer/have girlfriends/ [insert hetero-normal masculinity based stereotype here]’. When out with him, women have cooed over him, leading him to believe that he is a ‘ladies’ man’. He believes Del Boy is a role model and style icon and has not understood that he is a comedy character that people laugh at. He has had no other option than overtly straight masculinity by which to define himself.
It’s strange, because actually I’m not sure that in another life he would be any of those things. Though I wouldn’t dream of conflating being camp with being gay, he is nevertheless flamboyant, adores musicals and, more significantly, has only had enduring meaningful companionships with men. The relationship he has with his ‘girlfriends’ involve being chaperoned maybe once or twice a month on ‘dates’, and perhaps bumping into them at day services or social clubs. One thing that can be said for the social world provided for learning disabled adults is that it is virtually defined by an obscure heteronormative asexuality (see Murphy 2003, Brown 1994, Yar & Rafter 2014 for more on this) that has resulted in James being a homophobic chauvinist that is terrified of his genitals and what they do. He also desperately wants to get married and have children. I wonder what consent means in terms of his sexuality. Tokenistic as it is.
To give meaningful consent to sexual acts, research participation or medical treatment has some requirements. It requires that those in the position of power (everyone else if you are someone with a learning disability) ask for it. They have to value you enough as a human being to support you in decision making, and provide you with the knowledge necessary to be informed.
James would probably be considered a ‘hard to reach’ participant in public health research. Which is ridiculous – he’s an extrovert – he’d leap at the chance to be involved in anything, he is desperate to be valued. It would take time and resilience on the part of the researcher to peel back the layers of rhetoric he is so programmed to regurgitate, ethical clearance would probably take some time – or would certainly have that presumption made about it, and perhaps this is why he, and the diverse, interesting and knowledgeable population of learning disabled adults is so neglected in public health research. ‘Hard to reach’ is ill-fitting, ‘easy to ignore’ is what he is.
*increase in ‘independence’ often equates to a decrease in support hours for adults with learning disabilities which can be a difficult concept to balance.