One of the organisations that have played a key role in our journey to the Fringe is Mindroom, an Edinburgh-based charity who provide information and support to people with learning difficulties. When they heard about #BIBL they got right behind us, starting with a contribution to our Kickstarter campaign.
Shortly before we headed up to Scotland I did an interview with Sophie Dow, the founder of Mindroom, on Skype. Here it is:
Tell us about what Mindroom does and why?
I set up Mindroom in 2000. Mindroom’s inspired by my daughter Annie who is mentally handicapped and has a chromosome deletion on chromosome 1, the upper arm, where there are 21 genes missing. So far she’s the only person in the world with that particular chromosome profile and therefore it’s called Annie Syndrome.
When we went through the procedure of getting a diagnosis it took two years, which was way too long. Time is of the essence and two years is two years lost for the child and for the family. When we finally got the diagnosis, which was ‘brain damage that occurred during pregnancy’, The Royal Hospital for Sick Children, as its called here in Edinburgh, just said, ‘Thank you and goodbye’, and there was absolutely no follow-up.
I remember standing outside in the street thinking fundamental and basic thoughts like ‘Ok, so does this mean she’s going to die?’ or, ‘Will there be schools for someone like Annie?’ Your inner compass just goes wild because there are no answers.
Then I set about finding answers, and there aren’t that many. There’s a huge lack of collaboration between professionals, and between the important institutions, education, health, families and social services. They don’t talk to each other and they must because there’s so much time lost because there’s no collaboration.
So I decided I wanted to change that, to change the world. I very quickly realised that learning difficulties, for want of a better term – and there isn’t a better term for the moment – is a huge public health issue and therefore must be catapulted into centre stage, not dealt with in the corners of society. I also thought the negative vein running through all of this was unacceptable and very difficult to live with. We need to change all of that, turn the Atlantic Ocean liner around and look at the positives: how can we make this work? What are these children or adults good at? That was the beginning of Mindroom.
I stopped working as a journalist and foreign correspondent. I used to interview film stars – it was a very glamorous job which I loved and had a great time doing. I’d done it for 12 years, then Annie came along and she was much more important than interviewing Harrison Ford again, and that’s how I got started.
Mindroom is an independent Scottish charity that’s committed to raising awareness of all types of learning difficulties. It provides practical advice, essential information and tailored support to everyone who needs it.
Everyone’s entitled to a dignified life – the current ‘norm’ is way too narrow to include every mind. It excludes anyone who falls out of the perceptions that have ruled for so long. So our tagline, ‘No mind left behind’ means total inclusion, it means tolerance. We’re all different.
What’s your proudest achievement?
I think it’s on-going. I’m very proud of Mindroom so far – during these past 14 years we have established a very good reputation. Politicians, scientists and people from across the board consult us. Mindroom doesn’t exclude anyone and we have, from the start, always included all kinds of minds. We’re not autism- or Tourettes- or dyslexic-specific because we understood from the beginning that the mind is so complex it’s inconceivable that you’d have only one clear-cut difficulty. Coexisting difficulties are as important perhaps as the main one. You need to look at what comes with that, and what’s behind it as well, to understand the whole picture.
Has anything on the journey to creating Mindroom surprised you?
I’m still surprised at the lack of understanding and insight into all these issues. It still amazes me that people settle for prejudices. I cannot understand that.
What advice or message would you give to people living with a learning difficulty?
That it takes all kinds of minds to make the world go round. There’s a famous woman called Temple Grandin who’s absolutely on the autistic spectrum. She says, when she gives her lectures, ‘While you normal people who are not affected by a learning difficulty sit yapping around a campfire, it is us Aspeys (Asperger syndrome) that invent the wheel.’ I love that, I think it’s fantastic and I think it’s true to some extent. It takes all of us to complete the picture and that is, for me, the whole message.
What are the changes you’d like to see in attitudes to disability and difference?
Tolerance. That’s the founding platform for me and for Mindroom.
What’s coming up for Mindroom in the next few months?
We have just had a fantastic outdoor exhibition highlighting the beauty and complexities of the brain in Edinburgh called ‘The Brain is Wider than the Sky,’ a collaboration between Mindroom and The Patrick Wild Centre at Edinburgh University. The title comes from a wonderful poem by the American poet called Emily Dickinson, who died in the 1880s and was, I believe, on the autistic spectrum. She wrote a poem that is the guiding light in anything I do. The first verse of that poem is
The brain is wider than the sky,
For, put them side by side,
The one the other will include
With ease, and you beside.
‘It’s fantastic, and I’ve used it on the poster for the exhibition. For me this sums up everything – we are small and the brain, your brain, my brain, anyone else’s brain, like the universe, is infinite. Who are we to think that we can master any of it? For more information and to see many of the beautiful images from the exhibition go here.
How can people get help from Mindroom?
We help anyone who asks, for as long as they need, with as much involvement as they need, and for free – anything from email help, signposting, to – if it’s geographically possible – meeting people. We work across Scotland but we help people nationally and internationally.
I noticed you used the term ‘mentally handicapped’ which is not widely used anymore because it’s considered to have negative connotations. Did you choose to use this for a reason?
Learning disability and mental handicap can be the same thing. I think one real hang-up that I have is political correctness. We meet it all the time, when people think that they’re being nice when they’re really not saying how it is. I think it’s important to address matters as they are.
‘Suffers from’, I hate that expression. With relation to Annie, instead of ‘mentally handicapped’ you can say, ‘Has a learning disability.’ This terminology I’ve discussed with many of the leading world experts and I don’t think anyone is happy with ‘learning difficulties’ and ‘learning disabilities.’ Nobody can really come up with a better suggestion and ‘neuropsychiatric differences’ is too long. We’ve discussed it endlessly at Mindroom since the start, and for the moment we go with learning difficulties/disability.
You can find out more about Mindroom here. Talking to Sophie was fascinating and I felt there was a lot of overlap between what she’s set out to achieve and what we’re aiming to do with Touretteshero.
A big thank you to Sophie for taking the time to talk and share her experiences and perspective.