If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

The unheard voices of dyslexia

DysMysLexiaDysMysLexia Posts: 1Member Listener
edited October 23 in Guest blogs

Dyslexia is often associated with an image of a child who writes words backwards. Type in the words ‘famous people with dyslexia’ and the list is very male dominated. Though men with dyslexia are great achievers, women are under celebrated to say the least. As for being a brown woman with Dyslexia, our voices are seldom heard. I feel I represent many unheard voices with Dyslexia. 

I was born and raised in Coventry to Indian born parents. I am a high achiever with 2 degrees and a diploma and various other strings to my bow. I have numerous honours for my work in Arts and Activism such as a Fellowship from the Royal Society of Arts and I was recognised as Coventry Citizen of the years. However, under this veil of success is a woman who has daily struggles and bears witness to the struggles of others.  

black and white image of a woman

Dyslexia does not disappear. It stays and the adult voice is often forgotten because we fixate so much on Dyslexia in childhood. It’s for life. 

I struggle daily, I often forget how to spell which is more to do with the formation of the letters. I get dates mixed up and have sent friends a birthday wish a month early. I often find articulating words challenging and mispronounce things terribly.  

With Dyslexia there is stigma but within Asian communities there are more layers. Asian communities are stereotyped. ‘the Asian Nerd’ complex runs deep. We have this reputation to be the best and those that do not fit in are often labelled as failures or having a ‘curse’. There is also that added pressure of status and the marriage market.  

As a child I couldn’t grasp words. I had all the ideas floating in my head, but they were jammed. I struggled so much at school, keeping up in class, retaining information and basic organisation. Unlike most Asian kids who had howling strict parents, mine were laid back. Almost as if they had given up because my struggles were colossal. I only learnt to read or write at 8! I was seen in my community as a nobody.  

I remember in secondary when school black boards had their day and were replaced with white boards. I couldn’t read off them! My parents sent me for an eye test as I complained that I couldn’t read it of the white board. Though I told the optician the words were moving around, she ignored that and prescribed me glasses. It was only 15 years later I came into realisation the letter dancing was down to my dyslexia and not my eyesight.  

When I discovered I had Dyslexia at University it was such as relief, however the stigma was sticky. People assumed I was ‘thick’. In my community it was a bigger taboo and unspoken about rather than unseen. People often made comments that I didn’t try hard enough. People often show me pity when I drop the Dyslexic bombshell. Only to be followed by a jaw drop when I tell them I have a masters from the University of Birmingham  

We are still far removed from attitudes and prejudice.  

The negativity around Dyslexia sticks. I would not consider myself a natural academic but that does not mean I am not intelligent. I am a creative, a social engager and a community-oriented person.  

I found myself having to console an Asian family who found out their daughter had Dyslexia. They were in sheer panic and saw this as a complete inability to any kind of achievement. The tears were as if someone had died or she had a life-threatening disease! Their instant fears were how will she get to university? Their dreams of her being an Engineer were toast. The family even had the audacity to ask me if I could find a cure.  

This made me realise how vulnerable this girl could have been. When I told I had dyslexia, the mother examined my face and eyes to see if I was ‘normal’.  It was a long journey, but this girl ended up doing exceptionally well. Sadly, to this day they will never mention Dyslexia because parents said she been cured. If only they knew that her achievements were because of her Dyslexia! 

woman receiving an award from three men

People with Dyslexia face many challenges anyway but cultural values and norms add heat to the difficulty. We need to acknowledge it, accept it but most importantly speak out about negative viewpoints.  

I am the Artist Director with Caste Away Arts; a non profit Theatre company that tackles social taboo like Dyslexia and those cast away from society. We look at promoting diversity and creativity a platform for unheard stories. 

I am proud that I have Dyslexia and all that I have achieved. I am proud to be representing woman who climb hurdles in the face of challenges. I hope people find my story inspiring and that this begins to break the walls around the stigma with Dyslexia.  

Replies

  • dolfrogdolfrog Posts: 344Member Pioneering
    I am dyslexic. 
    So what is Dyslexia? 
    Dyslexia is a man made problem concerning decoding and recoding the visual notation of speech, or the graphic symbols society chooses to represent the sounds of speech.
    Dyslexia is language dependent.
    There are two types of dyslexia. Acquired Dyslexia, also known as Alexia, is caused by brain injury, stroke, atrophy, etc which is concerned with those loosing or have lost the previously acquired skills to decode and recode the visual notation of speech. And Developmental Dyslexia which has a genetic causes. There are three cognitive subtypes of Developmental Dyslexia - Auditory, Visual and Attentional. Which means that an Auditory Processing Disorder, a Visual Processing Disorder, an Attention Deficit / Disorder, or any combination of these issues can cause the Dyslexic Symptom
    So those who are classified as being dyslexic need to identify the underlying cognitive / clinical / medical cause of their dyslexic symptom, so that they can fully understand the nature of their own specific disability, and the limitations it or they impose. And more importantly identify the alternative compensating skills and abilities that they will be best able to access to work around their personal limitations.
    This will also prevent others who do not have one of these disabilities from falsely claiming to be dyslexic.
    So what is the underlying cause of your dyslexia symptom, understanding and explaining this will help create a better awareness of the real medical issues and disabilities that can cause the dyslexia symptom. 
    You could have a look at my Evernote dyslexia web page which includes links to leading international research regarding dyslexia at 
    https://www.evernote.com/shard/s329/sh/3629a60c-be24-4bc2-ac77-b696f4e051d9/c556f4f6c4e53c4da44c2fae23e3db4a 

  • AilsAils Posts: 1,076Community champion Disability Gamechanger
    Thanks for sharing @Sam_Scope.  This lady's journey with Dyslexia is really informative.  
  • [Deleted User][Deleted User] Posts: 0 Pioneering
    The user and all related content has been deleted.
  • April2018momApril2018mom Posts: 2,255Member - under moderation Disability Gamechanger
    Thanks for raising awareness of dyslexia @Sam_Scope.  

    I was born with dyscalculia myself. As a child I struggled to read old fashioned clocks and still cannot count beyond ten independently either. Reading a map is difficult even now. I tend to rely on trees and houses instead when out and about. I have poor money and time management skills as a result of dyscalculia.

    But that does not matter! When working I use a calculator to double check everything carefully or have someone assist me. I have a set of coping mechanisms that I use to basically compensate for my poor numeracy skills. 
  • newliz19newliz19 Posts: 1Member Listener
    I could never understand at school. I couldnt put my ideas on paper.i get low marks.because.it was unreadable.i ended doing sen nurse traing.in the 80s i wanted to O levels.told i had to do cses. Has adult. Has my kids growing. I went to college.  I got on a acess to he course. I was struggling.eventhough computer helped with my written. My syntax wasnt.r the wrong word. We got a student teacher.he told me at 32.i could be  dyslexic. .i was tested.i was told im dylexic.i have high iq. I went onto gain G.CSEs & A levels. I went on to uni. I completed my full year. &passed.but had leave due to health reasons. Ive done computer courses.
    At a recent pip interview. For my health problemd.i tried explain my problems with reading & communication.  Which made worse now im profoundly deaf.  I know how to take my time.r ask for someone to repeat what they said.  In the report .said i dont  have any problems . In that area.I  was calm.i try tbink before i speak.but i cant afford to get a report done .has tbey cost hundreds.  Now appealing. When fight dla at appeal.  Found it hard firing questions at me to process it .  
  • dolfrogdolfrog Posts: 344Member Pioneering
    edited October 15
    Hi @newliz19 ;
    There are three underlying cognitive causes of developmental dyslexia - auditory, visual, and attentional.

    What you seem to be describing is the auditory type of problems which is the Temporal type of Auditory Processing Disorder, the brain having problems processing the gaps between sounds, which can include the gaps between words in rapid speech. Those of us who have the temporal type of Auditory processing Disorder as the underlying cause of our dyslexia symptom, have problems processing the gaps between the sounds that the letters in a word represent, which means that we are not able to use phonics, nor phonetically sound out new and unfamiliar words from text. We tend to prefer to repeat the whole sound of a new word which we can match to its whole graphic representation which can be very tiring .
    I am dyslexic, I  have a high IQ which helps me work around my auditory processing symptoms including my dyslexia. These tend to genetic issues which can run through multiple generations of families, all of our sons and my wife also have auditory processing disorders. 
    The high IQ means that we tend to be very good problem solvers.
    Sorry about your recent hearing loss which could make things more complicated. 
  • chiariedschiarieds Posts: 350Member Pioneering
    @Sam_Scope ; - Awareness needs to be raised about many disorders. Thank you for sharing this lady's experience about dyslexia. There certainly should be no stigma attached to it.

    My husband is dyslexic, as is our eldest daughter. My husband fared poorly at school, & was made to feel 'thick.' He rarely discussed this with me, & didn't even talk to our daughter about it. I even had to write cheques out, as he rarely wrote anything.

    Luckily our daughter's dyslexia was picked up when she was about 9 years old, & she received help at that school. Later, at a parent's evening in her next school, seeing her English teacher, he complained about her written work. When I mentioned she was dyslexic, he was surprised as he hadn't known. We'd thought such information would naturally have been passed on.

    Because of poor grades, she struggled to get a job, but then studied at college for the travel industry, & was eventually taken on by Thomas Cook. She was with them nearly 8 years, & now works from home in the same industry.

    I still have bother with some of the texts my daughter sends me; sometimes looking through them 3 times to work out what she means.

    Hi @newliz19 - Welcome to the community & thank you for sharing your story about dyslexia too. I'm sorry to read of the understandable difficulties you had with your PIP assessment. You will find this community very supportive if you need any help.
  • zakbloodzakblood Posts: 407Member Pioneering
    well you learn something new each and every day, and from a 52 year old dyslexic, that's something, thanks for sharing 
  • dolfrogdolfrog Posts: 344Member Pioneering
    edited October 17
    chiarieds said:
    @Sam_Scope ; - Awareness needs to be raised about many disorders. Thank you for sharing this lady's experience about dyslexia. There certainly should be no stigma attached to it.

    My husband is dyslexic, as is our eldest daughter. My husband fared poorly at school, & was made to feel 'thick.' He rarely discussed this with me, & didn't even talk to our daughter about it. I even had to write cheques out, as he rarely wrote anything.

    Luckily our daughter's dyslexia was picked up when she was about 9 years old, & she received help at that school. Later, at a parent's evening in her next school, seeing her English teacher, he complained about her written work. When I mentioned she was dyslexic, he was surprised as he hadn't known. We'd thought such information would naturally have been passed on.

    Because of poor grades, she struggled to get a job, but then studied at college for the travel industry, & was eventually taken on by Thomas Cook. She was with them nearly 8 ytypes of testsears, & now works from home in the same industry.

    I still have bother with some of the texts my daughter sends me; sometimes looking through them 3 times to work out what she means.

    Hi @newliz19 - Welcome to the community & thank you for sharing your story about dyslexia too. I'm sorry to read of the understandable difficulties you had with your PIP assessment. You will find this community very supportive if you need any help.
    I can identify with your husband, years of bullying at school, I was not identified as being dyslexic until i was in my early 40s which was more due to ur eldest son having what we now understand as having similar problems in school. And it was a few years later when he was one of the first children in the UK to be diagnosed to be having Auditory Processing Disorder which is the underlying cognitive cause of his dyslexia symptom. 
    The more I investigated Auditory Processing Disorder online to try to understand the issues and get the help and support our son needed. I was asked by the UK Meedical Research Council to be assessed and diagnosed for Auditory Processing Disorder back in 2002 so htat I could set up a UK auditory processing disorder support organisation which would help them gain government funding for a 5 year auditory processing disorder research program. 
    I live just north of London and I had to travel to Sheffield University , where the first NHS auditory processing research project was being carried out. The assessment last over 4 hours, many types of tests. For me a key test was the Random Gap Detection Test, which measures the size of gap between sounds an individuals brain can process. When I did the test back in 2003 the test did not include a gap large enough for me to process. This explains why I have problems processing the gaps between words in rapid speech, which to me is is just one continuous noise, and why i can not process the gaps between the sounds that the letters in a word graphically represent.. I am cognitively not able to use phonics, and i am cognitively not able to phonetically sound out new and unfamiliar words  (names) from text. I need to  hear and repeat new words so that others can let me know if I am not pronouncing a word correctly, and I can only match the whole sound of a  word to its whole graphic representation in text. I would probably prefer to use a logographic writing system rather then an alphabet writing system.

    There are three different cognitive subtypes of developmental dyslexia auditory, visual, and attentional, so those who are identified as having the dyslexia symptom need to have the underlying cognitive cause of their dyslexia symptom clinically diagnosed by the type of medical professional who should be trained and qualified to provide such a clinical assessment..
    An audiologists to assess and diagnose any auditory processing disorders, an optometrist to assess and diagnose any visual processing disorders, and a psychiatrist to assess and diagnose any attention disorders..
    The problem is that currently the wrong medical professionals are only involved with dyslexia assessments educational psychologists who mare not trained or qualified to assess and diagnose any of the underlying causes of the dyslexia symptom. 
  • chiariedschiarieds Posts: 350Member Pioneering
    Hi @dolfrog- I am trying to understand your disorder more fully (& have tried learning more about it) as I believe you have something important to say.

    Please correct me if I am wrong, but I 'think' you have difficulty with Gaps in Noise, so where someone might say, 'what a great goalkeeper,' you might hear 'what a keeper,' or 'what a goal,' which wouldn't necessarily make sense to you within the context of the words spoken in a sentence or phrase. Or, as you say, something like this is not 'heard' at all as it becomes a continuous noise if someone speaks very quickly.

    I'm writing because, although I also researched (to help our family for a completely different disorder), I got so used to using medical terminology, to better get our UK Doctors onboard, that I then found it harder to simplify that so everyone would understand. I do feel you are explaining so much better recently, thank you.

    Our daughter's dyslexia was thought to be plausibly due to having secretory otitis media (glue ear) aged 4; she had 80% hearing loss on one side; less on the other, relieved by grommets.

    Many disorders should have a multidisciplinary approach, which is sadly not always the case. It is often seen to be the domain of just the one specialist, and sometimes the wrong one unfortunately.


  • dolfrogdolfrog Posts: 344Member Pioneering
    edited October 18
    Hi @chiarieds ;
    Otiitis Media with Effusion (Glue Ear) for some is a way of acquiring one or more of the various types of Auditory Processing Disorder, which is why some who have Downs Syndrome can acquire Auditory Processing Disorder as they may lack a natural immunity to Otitis Media, as also happens with the natural population of he South Pacific which is why auditory processing disorders can occur in up to 40% of that population as recent research has indicated. The problem with Glue Ear is that the brain has to process distorted sounds from the ears for long periods, and when the issues goes away processing a better quality of the sounds, which can cause the brain problems processing and understanding sounds including speech. 
    There are four types of Auditory processing disorder, the brain having different problems processing the sounds that the ears hear. The  Temporal type of auditory processing disorder is diagnosed using the Random Gap Detection Test, which has various sizes of gaps between two sounds, which most will be able to process and identify all the gaps. When I did the test back in 2003, the test did not include a gap large enough for me to process. 
    There are other issues such as having a poor auditory memory, word recall problems, not being able to follow long conversations, not being able to follow multiple verbal instructions, and correctly pronouncing new words heard from others etc .  

    There was an international dyslexia symposium held at Oxford University in 2013 which has speakers from many countries including the USA, Australia, UK, China Japan, and various countries in Europe, which spent a day and half discussing the Auditory causes of dyslexia and the rest of the week discussing the visual and attentional causes of the dyslexia symptom as well as the various genetic issues etc. 

    The first research paper that described the three cognitive subtypes of dyslexia was published in 2008 by a group of researchers from Germany. some of whom went o to publish a further research paper regarding the different areas of Grey matter which can indicate the source of these types of issues in 2013. 

    You could have a look at some of the Evernote web pages I have created in the last two years to explain these issues on Twitter and Facebook (I have a Facebook APD group)
    What is Dyslexia?
    The Four Types of Auditory Processing Disorder
    Some International Auditory Processing Disorder Research Papers (listed country by country)
    Some PubMed Dyslexia Research Paper Collections 
    You may have to join Zotero to access these collections which is free, as you may like to use Zotero to create your own research paper collections to share with others
    My Zotero Auditory Processing Disorders Research Paper Group


  • dolfrogdolfrog Posts: 344Member Pioneering
  • [Deleted User][Deleted User] Posts: 0 Pioneering
    The user and all related content has been deleted.
  • dolfrogdolfrog Posts: 344Member Pioneering
    edited October 18
    justdon said:
    @dolfrog sorry to jump in again here but wow that is facinating !ive had repeated ear infections my whole life otitis media and externa ..also a perforation or two.
    My right ear is always bunged up and i feel very deaf in it constantly yet hearing tests only show a small hearing loss .sounds have always been very distorted for me and i often feel quite spaced out and detached in places where everyone is talking at once and there is a lot of external noise etc .
    Such an enlightening post ..thankyou!

    What you have described is the Speech in Noise type of Auditory Processing Disorder, which is about the brain  having problems processing what your ears  hear when there are low levels of background noise. which can be environmental noise or as you mentioned others talking around you. 

    Auditory processing disorders are not a hearing impairment, and as such will not be identified by using standard hearing tests. Most who have auditory Processing disorders have perfect hearing.

    Auditory Processing Disorders are a listening disability, the brain having problems processing and understanding the sounds that the ears hear. 

    Currently very few UK audiologists are trained and qualified to full assess and diagnose all 4 types of Auditory Processing Disorder, as they have not kept pace with international research of the last decade or so, only interested in providing hearing aids. 
  • [Deleted User][Deleted User] Posts: 0 Pioneering
    The user and all related content has been deleted.
  • dolfrogdolfrog Posts: 344Member Pioneering
    edited October 18
    Hi All,
    The two research papers I mentioned in previous posts regarding the three cognitive subtypes of dyslexia.
    The first was published in 2008 by a group of researchers from Germany. 
    Congitive Subtypes of Dyslexia
    the link iis to the research papers abstract, initial description, at PubMed, if you click on the green button top right you can access the full research paper, including links to supporting research. 
    There was a follow up research paper i mentioned published in 2013 
    Cognitive subtypes of dyslexia are characterized by distinct patterns of grey matter volume 

    Hopefully this will explain the different causes of the dyslexia symptom.
  • dolfrogdolfrog Posts: 344Member Pioneering
    edited October 18
    justdon said:
    I am absaloutely blown away but what you are posting ..i also have vertigo and nystagmus.(rolley around eyes) i apparantly have very narrow uechstasian tubes and was diagnosed with glue ear in my 20s ..multiple and repeated very severe ear infections throughout my childhood and adult life.
    I have known for a long time about kids with hearing problems often having behavioural problems at school ?
    But this just throws a whole new light on many things !
    I often feel quite disorientated and have a lot of strange sensory or perceptual "distortions"
    I have often found it very disorientating when theres loads of background noise and find it incredibly hard to focus on what someone is saying in nosier enviroments.I have to really concentrate hard to the point of furrowed eyebrows lol  ,and often catch myself looking at peoples mouths when they are talking to lip read.
    I have some really strange "block" when trying to process information also.written information that involves processing (like complicated forms instructions or tests ) is often like trying to suddenly understand japanese and it can take me many many attempts hours and sometimes days to work it out where as other people will solve the problem within minutes ..Yet i can read and write with no problem at all..
    Its so frustrating !
    So sorry to take over with my "stuff"
    But obviously what your saying is very enlightening to me ...
    Thanks so much ..facinating !

    You might like to have a look at some pdf articles which resulted from an online Adult APD research program about 10 years ago.
    The adults were members of my Yahoo OldAPD group (an international group for adults who have APD as most other groups were and still mainly dominated by parents of children who have APD). The research program was run by an Australian psychologist Damien Howard, (who just happened to attend the same university as the guy who was running the UK APD research program, Prof. David Moore, when younger lol)

    The two articles are "Controlling the Chaos" and "The Problem with Strangers" both articles can be found on the articles web page of Damien's web site Ear Troubles (just over half way down the page)
  • [Deleted User][Deleted User] Posts: 0 Pioneering
    The user and all related content has been deleted.
  • dolfrogdolfrog Posts: 344Member Pioneering
    chiarieds said:
    Hi @dolfrog- I am trying to understand your disorder more fully (& have tried learning more about it) as I believe you have something important to say.

    Please correct me if I am wrong, but I 'think' you have difficulty with Gaps in Noise, so where someone might say, 'what a great goalkeeper,' you might hear 'what a keeper,' or 'what a goal,' which wouldn't necessarily make sense to you within the context of the words spoken in a sentence or phrase. Or, as you say, something like this is not 'heard' at all as it becomes a continuous noise if someone speaks very quickly.




    "Gaps in Noise" is the USA version of the temporal type of Auditory Processing Disorder, the they were trying to avoid the Random Gap detection Test, which explains the auditory cause of the dyslexia symptom which was all about the various USA remedial program industries marketing and making money selling their various programs which includes their dyslexia industry and the university that was marketing a program that was marketed as the cure for auditory processing disorder. since then two Randomised Control trials have demonstrated that the Universities program does not provide any long term benefit for those who have auditory processing disorder. 
    Unfortunately the phonics based dyslexia remedial program is still being marketed in the USA by the USA dyslexia industry which also has links with the UK dyslexia industry. 
Sign in or join us to comment.