A couple of years ago a friend made a “joke” on social media featuring the residents of a mental health Hospital including derogatory phrases such as “Window Licker”.
I took exception, I spoke out and the backlash I received made my head spin.
You see the focus was quickly shifted away from the “joke” and on to my own behaviour. Immediately I was accused of misunderstanding, being too sensitive and reacting in the wrong way. I should have realised that my friend didn’t mean it “that way” and I should have handled the situation better because her feelings were far more important than my own and it was for me to take the higher ground. It didn’t matter that I was already having a difficult time in my personal life (I had just had two consecutive miscarriages), the only thing that mattered was her feelings. The person who made the joke.
It was my fault. I was to blame.
A mutual friend quickly followed; how could I have behaved so badly? How dare I treat our friend so unkindly, I should have understood she didn’t mean it “that way”, I should have handled it better. It was my fault. I was to blame.
This has happened several times over the last few years, each time the same pattern is followed. Someone makes an unkind, thoughtless or downright ridiculous remark about disability and I have a choice of whether to say nothing and swallow it down or speak up.
If I speak up it is the end of the friendship no matter how I handle it. Each and every time I am to blame because I have misunderstood, been too sensitive and not handled it the right way.
But there is no right way to handle it. If a derogatory comment is made in public and I challenge it there and then I am to blame because I have caused embarrassment to the person who made the remark – because remember, it’s me who has misunderstood.
And if I challenge in private, I am still to blame because, you know, I have misunderstood and they disappear from my life (& quietly take their friends with them).
I’ve thought a lot about why this happens.
Blame is a key feature of disability discrimination, I encounter it regularly but feel like it’s something that isn’t very often discussed.
After I took part in Sally Phillips documentary last year the feedback from certain Daily Mail readers was that my children should not be entitled to access NHS services because I chose not to have prenatal testing. It was my fault Scarlett was here, so we should not have the same rights and entitlements as everyone else.
I have been asked by complete strangers “didn’t you have the test then?”. A very different question than “did you have the test?” with a clear suggestion that if I had Scarlett wouldn’t be here. It’s my fault. I am to blame.
Remarks made in every day conversation can range from very clear discriminatory language such words like “retard” or “mong”.
Sometimes people will mock others, suggesting stupidity by imitating a person with a learning disability by flapping their arms & pushing their tongue under their bottom lip. It’s funny, right?
Sometimes it’s more subtle. Prejudice disguised within a compliment. I am often informed how loving or always happy “they” are. At first this sounds like a nice thing to say. But the “they” strips my daughter of her individuality and the always happy or loving creates the impression of a person who does not feel the same range of emotions as you and I. It dehumanises her.
Recently, during a conversation about a work program for young adults with learning disabilities, I was told how amazing it was … but was asked “where do they all come from?” … “I don’t know where they all come from!”…. Perhaps I should have responded “their homes”, but in these situations my brain swirls around as I try to make sense of what is being said and I miss the moment. Instead I went home and cried.
For three years I have tried to find the correct way to deal with these interactions. Should I say nothing, let it pass, ignore the sick feeling in my stomach and the knowledge that I have let my daughter down?
Or say something, knowing that however gently I approach the matter, it will end the same – that it will be me who is deemed to be In the wrong, at fault. To blame.
But I am beginning to realise this is not my responsibility. It is not for me to learn how to manage your prejudices. My reaction, how I chose to respond, even if that response is to kick and scream and cry, is irrelevant because if you didn’t hold these beliefs I wouldn’t need to respond at all.
It takes courage to self reflect and effort to question your own views. And it is not my job to guide you through you this, it is yours. To simply blame me for misunderstanding you is lazy. Its the easy option, it is a quick & simple way of enabling yourself to continue through life without putting any effort in to considering how your view of the world could improve. This is your responsibility, not mine. I will gladly provide you with reading material or answer questions if you ask but, and I need to be very clear on this, this is on you.
As time goes on many parents of children with additional needs find that their social circle is increasingly and even exclusively other parents of children with additional needs. I swore this wouldn’t be the case for me, that we would stand our ground in the mainstream world….
But I now see why this happens. It’s easier. They get it. I don’t have to explain this stuff. And neither do they.
Over the last year I have felt my relationships shift. The children are forming friendships that Scarlett is not included in because she doesn’t understand how to participate. And I am not included in the adult friendships because I don’t get them. I can’t complain with the other mums about my toddler talking back because my toddler doesn’t talk. I find their problems silly and trivial compared to the challenges we face…… and I am always always guardedly waiting for the next insensitive remark that I have to silently swallow down. We get invited less and I make other plans.
So bit by bit my friendships in the SEN world strengthen and those in the mainstream world weaken until eventually we will disappear from your view entirely. Which I’m actually fine with, the friends I have made through Scarlett are truly spectacular.
But this is probably why, when confronted by a group of adults with learning disabilities just getting on and doing their jobs the question “where do they all come from?” is asked.