Disclosure

I hear time and time again people being scared to mention their Dyspraxia, being so quiet that they hope they become invisible and hoping that they can hide away and people will ‘never know.’ I know because I used to be one of those people. I was scared of what people might think if I told them that I was Dyspraxic, I didn’t know how to explain myself or my Dyspraxia and I thought that it was in everyone’s best interests if people never knew. Deep down I just wanted to be seen as Alice and not as ‘the Dyspraxic’

As we get older when and how to disclose becomes an issue that everyone with a disability has to grapple with. The questions ‘Should I tell them’ and ‘should I explain’ have been buzzing around in my head many times- a bit like an overplayed record. At school I chose not to tell people- nobody knew, unless they were a teacher and they had to, because it was their job to know. I adopted this strategy because I didn’t really like having a ‘label’ at the time and I didn’t want to have to talk about it at length- which I envisaged disclosing would make me do. I also realised that disclosing my Dyspraxia to the people who taught me didn’t always mean that they understood- which didn’t give me much faith for the rest of the world. When I was at university I was very cautious of the student services and didn’t accept any support that might have been useful, being the stubborn person that I am and wanting to do things my way. When I was doing my masters, I disclosed my Dyspraxia in the application form but didn’t mention it after that- it was only about two months before the end of my degree, that I was called into the course leaders office and was presented with the question ‘Alice do you have a disability? I didn’t realise you were Dyspraxic’ when he had finally decided to read my file- how very useful. Just goes to show that people don’t always make a point of doing their homework or reading important forms, unless you purposely tell them. If I could give my younger self some advice I’d say ‘bloody hell woman, just talk about it- it’s not that bad’

Eventually the issue of whether to disclose to my friends came up, I started to talk to a select few people, which I found to be very encouraging and they were more supportive than I’d ever imagined them to be- by actually taking the time to understand what being Dyspraxic means. If some friends didn’t know when I first started talking about it, they probably do now because I’ve spent eleven months writing this whole blog. I’ve become pretty open, and will happily answer anyone’s questions or curiosities that they may have. The event that sparked me to realise that I probably should disclose to my friends was when I applied to go to India. I went to India for three months with a fantastic organisation called Platform 2 (that doesn’t exist now because this bloody government cut all the funding- that’s about as angry and political as I’ll get on this blog.) One of the reasons I got a place on a Platform 2 program was because I talked openly about my Dyspraxia and the impact it has had on me in the interview. Platform 2 was for ‘disadvantaged’ 18-25 year olds and because I have a disability, I was classed as disadvantaged. Being Dyspraxic definitely worked to my advantage here- and it was wonderful living in the desert for ten weeks with people who had their own unique story to tell- far removed from the rich middle class gap years that we see advertised all too often, that the majority of us will never be able to afford unless we either rob a bank, our dads the Prime Minister or we went to Eton.

We will all eventually encounter the challenge of when and how to disclose a disability to future employers or talk about it in your job- the best advice I can give anyone asking themselves these questions is to do what feels right for you. I’ve adopted many approaches, from not mentioning it in application forms, to talking about my Dyspraxia in regular supervisions and the possibility of things such as access to work- I really can’t encourage you enough to take any support that the government is half heartedly offering you, despite how hard it might be to actually get it. I’ve also been through the process of being discriminated against, twice- once in what turned out to be a very short term job and then when I applied to another organisation to go abroad, that I won’t name here but quickly went down in my estimations. On both occasions it ended up with me complaining and shouting very loudly about how rubbish they are. I also realised that it was all down to ignorance,  a lack of understanding and basic common sense, as to the way they treated me. Hence why it is so important for people to talk about it- especially people in positions of power and celebrities that young people look up to, I know a few famous people have recently come forward with stories about their Dyspraxia but there are so many more who are quite probably Dyspraxic but fail to acknowledge it in the media- I mean come on guys, if you don’t talk about it, others won’t be as encouraged to do the same. I understand how testing the question of disclosing to employers can be, I’ve seen both sides of the scale and I’m fortunate to finally be working for a very supportive and encouraging organisation, who I am more open to about the impact of my Dyspraxia than I have ever been in a work situation.

With all the writing I do now I can’t really avoid the issue of disclosure, when I get into conversations about enjoying writing a blog and trying to finish a book- I’m met with the question ‘so what do you write about?’ I usually respond with ‘how long do you have?’ and then either give them the short or long version depending on who they are. Sometimes these discussions can be positive and other times people can be totally bemused. I had an interesting conversation in the hairdressers the other day, I was chatting about what I was going to do when I got home, as you do when you’re at the hairdressers, so as always the topic of my writing came up, I don’t really think she knew what to say, I know I didn’t- I briefly explained some of the awareness raising work I do, and she offered to read my book (if I ever get it finished) despite admitting that she never actually reads books- which was lovely of her. We then moved onto easier hairdressers topics of discussing the weather and how scarily close to Christmas it was. Another part of my life is volunteering in as many places as possible, I’m not going to talk about who I volunteer for here but if you’d like to chat more about what I do when I’m not writing, feel free to contact me. As a general rule I don’t talk openly about my Dyspraxia with people who I volunteer with (well maybe not as a rule, I don’t think I actually ever made a rule- I just haven’t made a point of doing it yet.) The other day I went in very happy, mainly because I’d had a very good week with this blog and I was finally getting somewhere promising with the book. We hadn’t seen each other for a while so started chatting, as we always do, about how the other was. The conversation somehow moved onto my love for writing, and I ended up explaining what I do, why I do it and that I was Dyspraxic. I didn’t get much of a response, apart from that she wished me well and so on- looking back I’m not entirely sure she knew what Dyspraxia was, which could have accounted for some of her confusion as to what to say. I know sometimes I assume that people understand what Dyspraxia means, when in reality sadly that is not the case. This is why I write this blog so that people are aware and have an understanding- as to make such conversations less awkward.

Over the last couple of weeks I have done two exciting things, in terms of openly disclosing who I am and talking about the positives that can come with being Dyspraxic. Last Tuesday I went to a conference, where there were many people with Dyspraxia and other Neurodiverse conditions (autism, aspergers, adhd, dyslexia and cerebal palsy.) Everyone at this conference were very open about their condition and how it affects them. There was three incredibly inspiring and engaging speakers- who I became captivated by and the stories they told. They each talked about how they had overcome their diagnosis, pursued areas that they excelled in and dealt with the many trials and tribulations that come with being viewed as ‘different’- that many of us with any emotional, educational or neurological conditions will be all too familiar with. During the coffee and lunch breaks I started to chat to people with the same condition as me, to people who at first were complete strangers- I started to tell them my deepest secret that I had tried to keep hidden for many years. I always love meeting people who have that instant understanding, you can just explain things how it is and they’ll ‘get it’ – people who you have that immediate connection with because they have been there too.  I came away feeling very inspired and determined to move forward with the next stage in my life. Shortly after the conference, I was invited into my old secondary school to talk to parents and teachers about myself and the Dyspraxia support group that I have set up. I would have never imagined that I would be back there, at school- the one place that is tainted with many bad memories, saying what I said yesterday. The one thing that I took away from the speakers at the conference is to be totally honest with your audience, to convey the message that you want them to take away. I did just that. I stood up, in a building that wasn’t there when I was at school and talked from the heart. The first thing that I mentioned was that I am an ex student and that I also have Dyspraxia- this seemed to get their attention. I then talked about feeling misunderstood, but gradually moving towards accepting and understanding who I am. I mentioned the positives that can come with Dyspraxia, the strengths and talents that others may struggle to find. I expressed how I wanted my new support group to be a place where young people and adults can go to meet others who understand, where they don’t have to worry about being different and a place they feel that they can belong. I know the real importance of having a sense of belonging and fitting in when growing up- I really struggled to find where I could belong, until I discovered writing- something that I was actually good at, when I found most other normal day to day things a challenge. You can ask me to organise words on a page to eloquently express myself, but if you want me to give you directions or explain arithmetic – you’re probably asking the wrong person…

All in all my talk went very well, I even had someone come up to me at the end and say ‘I just want to shake your hand, for everything you’re doing’ – can’t get much better than that! I hope that I am able to do more speaking in the future, as it’s only by more of us coming out and openly talking about it, that everyone else will realise that there’s nothing to be afraid of and there are others who have been there too.

 

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3 Responses to Disclosure

  1. Stephanie says:

    Hi I have dyspraxia I found out in college and I’ve started to struggle with it and I get a little frustrated sometimes, I also don’t know what type of dyspraxia I have and would like to know how I go about having some kind of tests done to help deal with it as I want to go back to college but have no confidence as I’m not good with assignments or wording this wondering if u could help please

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  2. Hi Stephanie, Thank you for getting in touch. As a first port of call I would suggest going to your GP, as you are at college I’d also talk to your college support centre, they will have trained staff there who will be able to put you in touch with an assessment centre- it’s often so much easier to get a diagnosis when in Education. I hope this helps, and I apologise for the delay in this reply. Feel free to contact me via the contact form above or through these comments if you have any further questions.
    Best wishes, Alice

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  3. Pingback: Who to tell… Does it really matter? | alittlemoreunderstanding

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