Who to tell… Does it really matter?

I was a closet Dyspraxic for some years (before I saw the light and disclosed), you would only know about my diagnosis, if you either taught me, were my family or I trusted you with my life (and during my younger years, few people fell into that category.) I was able to keep it a secret for so long, because my disability is hidden, just like most Neurodiverse conditions, of Dyslexia, ADHD and Autism, you can’t see it, there is no white stick or wheelchair to act as clues. Having an invisible disability also had it’s downsides as well, as I was in many ways treated as ‘normal’ so my Dyspraxic tendencies were often labelled as me being ‘odd’ or ‘awkward.’ I could also read and write not just well but very well, this academic ability and being statemented, confused many who taught me. I remember being given a reader in one of my exams, this frustrated me as well as my parents- I could read perfectly well, I just needed extra time to process the questions. This isn’t the start of an ‘I’m Dyspraxic and here’s my story’ blog post, you can read further back through previous articles to find blogs on that vein. Here I wanted to pose questions, probably more questions than I have answers to- but I feel the questions need to be addressed.

The questions I’ve been asking myself on repeat is, who to tell? Who actually needs to know and does it really matter? Do you tell your friends, your boss, work colleagues or Joe blogs on the street? I certainly wouldn’t disclose to anyone without good reason to but it has posed the question as to just how visible hidden disabilities are. They are visible in some parts of the media, where high powered celebrities have disclosed, but how far do we have to go to raise the profile of our difficulties- the difficulties that don’t define us but form part of who we are. I have so much respect for those in positions of power who choose to disclose, it gives hope and reassurance to the rest of us, and for those who lack the ability, vision and empowerment. A while ago I wrote a piece on disclosure, sharing some of my experiences of ‘coming out’ as Dyspraxic and some strategies I’ve used to disclose. My decision to talk about being Dyspraxic, wasn’t something that came to me easily, but was the right thing to do for me. Talking to others with dyspraxia about similar difficulties,  helps so many people (me included) to understand themselves and to empathise with shared frustrations and feelings that are often dismissed by society: a theme that came up on twitter recently was being unable to drive, something that has greater implications than people realise (I have a whole blog post planned on driving, because I clearly have so much to say on the subject… )

So disclosure. Does it matter? In some ways it does, but who you choose to tell is your own personal choice. I know that so many people, from reading posts on social media experience frustrations when dealing with people that are made more difficult because of a Dyspraxic trait. Do we explain to the lady at the checkout and all of the customers behind you that you need more time to put your change in your purse because you struggle with fine motor skills? Do you tell the lady behind you at the escalator that you can’t judge distances so are taking longer? Do you tell the bus driver why you don’t want him to drive of before you take your seat? Do you explain to everyone at work that you may struggle with remembering names of new people in meetings because of problems with short term memory? Do you mention to your friends that you sometimes struggle with social situations and may miss important occasions or events because of anxiety? Of course if all of the above people did know it may change the way they react towards you and it could raise more awareness, maybe we’d even begin to become more visible but it could also be counter productive. Does it matter that they know or don’t know? I guess one of the solutions is more training in the workplace to give people an increased understanding and acceptance of hidden disabilities. Although this doesn’t help us deal with those we come into contact with in our day to day life- saying ‘I do this because I’m Dyspraxic’ to a complete stranger can cause mixed reactions, and I don’t think many of us are ready for those reactions.

on a personal note disclosure for me has lead to one of the following; ‘oh really! I would never have known’ or ‘ah ok.. ‘ followed by an awkward silence because they don’t quite know what to say next and ‘That’s me too! I do that/have those feelings as well..’ They then go onto tell me how they’ve struggled with certain things throughout their life and that they think they might be undiagnosed. Any mention of Dyspraxia’s links with mental health and my own challenges with anxiety, almost always leads to them exploiting my natural empathy and me becoming a convenient counsellor or people belittling my feelings by saying things similar to;’I get lost all of the time too, it happens to all of us.’ My experience of disclosing has been very frustrating as well as incredibly positive. We are all going to have those difficult encounters but it’s the positive affect disclosing has had on me that I hold onto. I do wonder what the difference would be if all the people I’ve disclosed to didn’t know, would it matter?

I know that the awareness work I do and this blog wouldn’t be possible without my friends knowing, but beyond that I don’t know. I do know that I have just asked myself too many questions that I will probably never find answers for and that if we want hidden disabilities to become visible, we need disclosure. I guess that is the answer- it does matter.

I will be very interested to hear anyone’s views/experiences on this issue.

 

 

 

 

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6 Responses to Who to tell… Does it really matter?

  1. Lily says:

    I agree with you, it does matter, and if we don’t speak up we will never be visible!
    My story is as follows:
    At school everyone always knew, as they saw me and a few other people stick ‘yellow stickers’ on our essays and have more times during exams. They would usually assume I have the more well-known dyslexia, but I would correct them all the time. So yeah, until Uni everybody always knew.
    And then I went to Uni and I realised…that I missed everybody knowing. Or I just assumed its a normal thing to talk about. So I would ‘come out’ randomly, like I just spilled a drink and would look at the mug and say really loudly ‘oh, you f***ing dyspraxia, shut up!’ as a joke and people would be like ‘ooh, you’re dispraxic?’. ‘Ah, yeah, I forgot you all didn’t know.’. Also one day I, spontaneously, ‘came out’ on facebook, so now all my 800 acquaintances officially know. Funny, how most of them never mention it or completely forgot a few minutes after reading it. Maybe it’s not so much of a big deal after all? The only people who seem to make a refrence to it later on, even after a long while, or fellow dispraxics who suddenly had a ‘yey, I’m not alone’ moment or people generally interested in medicine/psychology/how brains work etc. etc. The bottom line is- I NEVER tell people I work with (that I’m not friends with outside work) because, sadly, misunderstanding does happen. But in private life I encourage you all to shout out from the rooftop about it, because those who mind don’t matter and those who matter not only don’t mind, but will often help you in one way or another.
    Take care x

    Liked by 1 person

    • Hi, Thank you for sharing your story with me. I agree with you, those that do matter will support you and take the time to understand. I’ve had mixed experiences at work, with the most recent being more positive- Disclosure is so difficult but if we don’t talk about it, no one will ever understand. Alice

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  2. sheila mitchell says:

    My son is dyspraxic, he is an adult now. He was diagnosed when he was 12, he remembers hearing the doctors say that he would never ride a bike, swim or drive a car, but he proved them wrong by learning to do them all. We have found that very few people know what dyspraxia is, or they just think it is “clumsy child syndrome” .Many people over the years have trivialised the problem, saying things like …oh if you think he falls over a lot….you should see my 4 year old. At school he would be sent out of class to go to special needs, only to be sent back having been told he was too clever for special needs. He has told his friends, they had already picked up on his lack of social skills. With work, he has waited until he had proved himself reliable and then told the bosses. Unfortunately his first good job ended when the company closed, but he had been promoted to supervisor, one day someone was laughing and making comments about his handwriting , because the boss knew, he wiped the floor with the one making fun, and told him using a lot of 4 letter words that as long as he knew what it said it didn’t matter what it looked like. So telling some people has helped. Now my 5 year old Granddaughter is in the middle of tests, but it is looking like she has dyspraxia, even with family history the family keep getting visits from social services investigating the number of bruises she has. She has her own accident book at school as she was filling up the class accident form . After her first week of school….all half days, her teacher said that if she didn’t start listening she wouldn’t be able to go on school trips because of health and safety. When asked to do things she frequently either says no, or ignores the teacher, at playtime it has taken 2 teachers to get her back inside as she sometimes refuses. Her parents have split up and she lives with her Mum my daughter, but her Dad hasn’t taken it in or told his family. Hopefully being diagnosed so young she won’t suffer in the school system like her uncle did. Day by day more problems occur, the tinsel halo in the christmas play irritated ,but she needed to wear it to be an angel, and when everyone is singing she needs ear defenders.

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    • Hello Sheila, thank you for taking the time to share your story with me. I too was told I wouldn’t be able to things- but I’ve done them anyways! I was diagnosed when I was three and being diagnosed so young has helped in someways, but it is important to have understanding people around you, who are prepared to listen. Good luck to your family and I hope that your granddaughter gets the support that she needs.

      Best Wishes,

      Alice

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  3. Lynn Byrne says:

    Some people are daunted by saying the words. Fear of having a label. I disagree…..the best thing I ever did was be open, honest and sometimes vocal. …..I feel that my son is better understood in his environment, be it school, scouts or activities if those in charge are aware of his struggles. Nothing to be ashamed of. ..but the more people that understand, the more comfortable you will feel!

    Liked by 1 person

  4. Pingback: Disclosing Dyspraxia | The blog with (more than) one post...

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