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What it is like to be trapped in a disabled, non-verbal body with a sharp mind

JonathanBryanJonathanBryan Posts: 3Member Listener

Listening, looking and waiting to be heard, I spent the first part of my childhood unable to tell my story. In silence I lived behind the labels.  Labels attached to my dysfunctional body. Severe cerebral palsy. Profound and multiple learning difficulties. Non-verbal. Chronic lung disease.  Curved spine. Transplanted kidney. Hearing loss. Squint. Short stature. Deranged liver. Even my teeth have a disability. 

For all of my eight years these labels had defined me. Expectations founded on my outward appearance. But more than the rest, the silence.  Shrouding my personality, silence suffocated my identity – my very being sealed shut; with my loves, passions, dislikes and sharp mind deadened in the soundless void. 

My name is Jonathan Bryan, and I am 13 years old; above is an extract from my memoir, Eye Can Write, in which I attempt to describe what it is like to be trapped in a disabled, non-verbal body with a sharp mind. I am also a blogger, you can read Eye Can Talk here.

Like most children in my physical condition I was labelled with Profound and Multiple Learning Difficulties (PMLD) upon entering the educational system despite no one having found a reliable way for me to access the curriculum. Consigned to a sensory class I spent the majority of my time in special school physically stimulated and mentally switched off.  Unfortunately, often the non-verbal child is treated as a pre-verbal toddler, with cartoons and large rhyming books to match.  

 

When I was seven my mother removed me from special school to teach me to read and write. Imagine the outcry if able bodied children had to be removed from their mainstream school to learn basic literacy and numeracy. Yet there are many children with Special Educational Needs and Disabilities (SEND) being educated outside the school system.  

The great tragedy is, for a non-verbal child like me, being illiterate shuts off the only way we can independently communicate exactly what we want to say. For us, being able to write and spell is not just a life skill, it holds the key to living life in all its fullness.  

In my book I try to demonstrate the enormous difference being able to spell made to me; telling my family and friends what they mean to me, filling my free time with activities I had described, attending my local primary school and participating in class discussions, sharing my faith and expressing myself through my writing. When I learnt to spell, life became fuller, richer and deeper. 

 Through all the joy of becoming unlocked, this one question nagged me the most: how many other children labelled with PMLD are not taught to read and write? 

Galvanised to try and make a difference, I have set up a charity, Teach Us Too, promoting an education system where all children are taught literacy regardless of their label.  We aim to do this by challenging attitudes and assumptions based on labels; influencing educational practice and encouraging ambition; and sharing good practice for practitioners and parents alike.   

As a voice for the voiceless I will continue to speak up for children yet to be unlocked. 

Let us know your experience or thoughts on this, have you ever felt that decisions have been made about you without your input? Do you feel that your impairment is seen before your personality or skills? We'd love to hear from you in the comments below.


Replies

  • Sam_ScopeSam_Scope Posts: 7,348Administrator Scope community team
    Thank you so much for sharing @JonathanBryan :)
    Scope
    Senior online community officer
  • JonathanBryanJonathanBryan Posts: 3Member Listener
    Thank you for giving me the opportunity
  • Emma_ScopeEmma_Scope Posts: 44Navigate Courageous
    Thank you for sharing this @JonathanBryan :) I look forward to reading your book and learning more about about your, and as you point out others, story x
    Emma Bailey
    Parent Advisor
    Navigate Team at Scope
  • Adrian_ScopeAdrian_Scope Posts: 1,356Administrator Scope community team
    This was a really interesting read @JonathanBryan. Thank you for sharing.
    Senior Community Officer
    Scope
  • Ami2301Ami2301 Posts: 4,924Community champion Disability Gamechanger
    An amazing and insightful post @JonathanBryan! Others often see my wheelchair and impairments before they communicate with me, it is incredibly frustrating! You are an amazing young man and what you do for children is very admirable :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Richard_ScopeRichard_Scope Posts: 1,412Administrator Scope community team
    Fantastic read @JonathanBryan thank you.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • emmarenshawemmarenshaw Posts: 129Community champion Courageous
    Loved reading this @JonathanBryan thank you for writing it.
  • EarlysoundEarlysound Posts: 37Member Connected
    It was really profound reading this, and thanks so much for posting here @JonathanBryan
  • TopkittenTopkitten Posts: 926Member Pioneering
    edited April 10
    In current society it is far too common to stick people into labelled groups, especially the disabled. I am fortunate in one way in that I had 40 years of 'normal' life. Working, family and children were important to me as was providing a home and safe environment. Not that it was easy as my eldest has dyslexia and we had to move her from school to school before putting her in private school for a while. The pressure plus my fathers death in my 20's put too much strain on my first marriage and it collapsed. [edited by moderator] Now my daughter suffers Chronic Fatigue Syndrome and our total lack of relationship prevents me from helping her. 'Normal' life is much overrated.

    Now I am trapped in a physically failing body yet have the same brain with an IQ of 159 which evidently puts me in the genius category. I have little or no contact with the outside world and due to developing Mental Health issues and a memory affected by either medication or age or both and this means I just sit and think (when I bother to) and usually come to the same conclusion, death is preferable. However, I can certainly relate to being trapped inside a useless body and also know from experience what is lost due to labeling. Few people have any interest in supporting such a situation and the health services non at all. In fact the NHS is quite happy to destroy a persons mind just to keep them alive. What happened to "first do no harm"?

    I hope you find a good group to help you move forward and enjoy life as much as possible.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • MickConnonMickConnon Posts: 56Volunteer community advisor Courageous
    Wow! thanks @JonathanBryan for sharing this. Have been riveted to the screen. I once had a new member of staff ask me- “you’re talking to John normally but he can’t communicate back to you, why do you bother?” My reply- “Lesson 1. Just because John can’t verbally speak back to me he communicates in his own way which to me speaks volumes, maybe you should spend some time with him and learn about non verbal communication?”  
  • KrystalKrystal Posts: 5Member Listener
    Thanks @jonathan Bryan for sharing your story, looking forward in reading your book Krystal.
  • SickasachipSickasachip Posts: 4Member Listener
    I too will look out for this book  x 
  • BoyMomBoyMom Posts: 1Member Listener
    I cannot wait to read your book. My son just turned 5. He is physically profoundly disabled. Cognitively, I was sure he was picking up on a lot but with no way to prove it. With limited reaching I wasn’t able to get consistent responses with an iPad communication app I found. Last fall we landed a sweet new Tobii Dynavox eye gaze device and it has been a game changer. That was his unlocking moment and it turns out Keaton knew colors and animals and articles of clothing and all sorts of stuff! It changed the way people talk in front of him because now they know he is absorbing it all in there. He isn’t treated like a baby anymore. Thank you for advocating for children like mine who very well could get lost in the system and unnecessarily left behind. 
  • Adrian_ScopeAdrian_Scope Posts: 1,356Administrator Scope community team
    Welcome to the community @BoyMom and thank you so much for sharing this with us.

    I think as parents we often know our children best and I'm so glad you were able to recognise your son's cognitive abilities and advocate on his behalf. The eye gaze device sounds like it's working really well for him. :) Please keep in touch and let us know how he continues to get on.
    Senior Community Officer
    Scope
  • GizmoTiddlesGizmoTiddles Posts: 123Member Pioneering
    Thank you @JonathanBryan for sharing ,69 and reading brought  tears to my eyes. 
    Will now start reading your blog .
      Have a good life young man 
    Gizmo
  • kmw935kmw935 Posts: 1Member Listener
    Thank you! I was a Special Ed teacher. Multiply Severely medically fragile class. I had students like you. I fought for curriculum designed for you. I fought for eye gaze computers, communication devices, anything that allowed my students to participate in their environment. I had students, just like you. Thank you! I believe that my students were trapped within their bodies and that they understood everything that we said. Thank you for proving this fact!
  • April2018momApril2018mom Posts: 486Member Pioneering
    I can’t wait to read your book. Is it available yet? My son is physically disabled but he talks and behaves like his twin sister his partner in mischief and his playmate.
    This resonates with me. I encourage my son to politely speak up. At 2 years old we are currently focusing on numbers and letters plus social skills too. 
  • JonathanBryanJonathanBryan Posts: 3Member Listener
    Thank you for your message. My book, Eye Can Write, is out and available from Amazon and good bookstores.
    All the best with your son. 
  • AilsAils Posts: 166Member Pioneering
    Thank you for sharing your story @JonathanBryan.  So inspiring and a great read.  I will take a look at your blog.  Good luck with your book and the charity.  :smile:
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