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Changing attitudes- Setting an example

WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
Hi all, 
         I hope that this post finds you all well in these strange times. Please, if I may, I would like to share this with you as I am interested to know what people's thoughts on it are and if feel you would like to then please do share your experiences. 
I am in my mid twenties and I have Cerebral Palsy. Whilst at school I used to give talks to other year groups about what it was like to live with a disability and linked this in with Anti-Bullying days held at school. It has always been a passion of mine to educate people, particularly children, about disability as I believe this is one way to try to reduce prejudice. However, as a teenager, I really struggle with my disability emotionally, and so I closed down and as a result I did not continue with my passion. Now I am older and have some life experience I am really keen to rediscover my passion and to share my experience with both disabled and able bodied students. I believe, due to my experience as an adult, I am able to widen this and share the importance of talking, in whatever form, about how we are feeling as well as self-belief and confidence. I feel I have a rough outline of a plan  as to how I may do this but would be really interested to know if people have any thoughts on this such as whether you feel there is a place for this in schools, if you have any suggestions of charities who may already do this or if you would like to share experiences of your time at school. I believe our time in education is crucial, but not only in terms of learning but also in how we feel about ourselves and the shape of our futures. When I left school I was lost but thankfully with the support my family and a little determination I have been blessed with some really great experiences despite my disability. I want to help other disabled and able bodied youngsters see that there are many positive opportunities out there and though it is tough and by no means a guarantee, hope, confidence and self belief can help on the journey that is life. I do acknowledge that for some, due to circumstances beyond their control, this can be difficult but feel there is any opportunity to help those as well. As a youngster, disabled role models such as teachers were rare and I think it highlighted for me opportunities were unlikely, I want to prove that this is not always the case and try to support where I can. I may not be very good at it and it may not succeed but I believe it is worth a try. Any thoughts on this would be greatly appreciated. Thank you for taking the time to read this. Many thanks. 

Replies

  • OxonladyOxonlady Member Posts: 243 Pioneering
    WestHam06, Well done, I do support your initiative and I believe it is imperative that pupils are educated about disability, chronic illness and the effects of these on people's lives. 
    I may be able to contribute more to this discussion but unfortunately I am extremely fatigued currently. I can barely keep awake. Best wishes to all. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Oxonlady
                            I am sorry to hear of your extreme fatigue currently, I do hope things improve for you as and when. Thank you so much for your support it means a great deal. I too am in agreement that pupils need to be educated and I really hope that I am able to have a positive impact. Thank you. 
  • janer1967janer1967 Community champion Posts: 6,200 Disability Gamechanger
    @WestHam06 I would fully support your plan and think it is an excellent idea. It is so important that education around disability comes at an early age. Maybe it would be good if you could link in with some inspirational disabled people who have really had some outstanding achievements.

    Another area I think would be invaluable is that children understand that some of their friends live with adults who have different disabilities and illness and how this impacts on their life too. I say this as I am disabled and my son was 10 year old when it happened. He had to get used to a new life too, I could no longer drive, take him to school, go on outings and he had to help with with some tasks which he has never complained about. In fact in the beginning he wouldnt let anyone else push me in my wheelchair.

    He has been an inspiration and I know how many young carers are out there but do their peers really understand the challenges these young people have ?

    I wish you luck in your project and happy to assist in anything
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    My apologies @Oxonlady, I meant to have also added to my last post that please do, if and when you feel able, add to the conversation, I am certain that you will have so much value to add and I look forward to hearing from you when you are ready. Best wishes and take care. Thank you. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @janer1967
                              Thank you so much for sharing your experience with us, it takes courage and is greatly appreciated. It is really interesting as I haven't really thought about this aspect of disability but it is vitally important that young careers do have their voices heard and experiences understood. I know that my younger siblings help me as I need it but it is generally my Mum who cares for me. I imagine it can be very difficult for a child to have to adjust to a new set of circumstances, your son sounds truly inspiring. Please may I ask, do you feel your son was supported at school in dealing with his home circumstances and how do you feel he was treated by his peers? Please don't answer if you don't feel you want too. 

    I also like the idea of linking in with disabled people who have achieved some truly outstanding achievements as well as those who have achieved in their own lives for example no-one thought I would ever work but I have done. 

    Thank you so much for your support with this and your brilliant ideas, I greatly appreciate them and hope that I can make the positive impact that I would like too. I think it will take time and a lot of hard work but I am willing to do this as I passionately believe in it. I will be sure to keep people updated and share in the experience. Thank you. 
  • janer1967janer1967 Community champion Posts: 6,200 Disability Gamechanger
    Hi again and in answer to your questions

    My son was fully supported in school they were fantastic, they had been keeping an eye on him as his dad left us a few months before I had my amputation. They used to come and pick me up if I needed to go to any assemblys or anything.

     My son was also awarded a bravery award through ambulance as he called them when I collapsed due to sepsis, the ambulance service came to school brought the ambulance and did a talk to the whole school and awarded my son with his certificate and the local press and radio were there too (a real proud mummy moment)

    His peers have also supported him, I have always encouraged him to bring them home so they see first hand what it is like for him (not all negative though) and they have often come with us shopping and stuff. They also go together to places I can no longer take him like swimming and stuff .

    I make sure he still has a childhood and doesnt have to miss out on anything if I can possibly do so. 

    He surprises me every day with how well he has coped with so much change and upset in his young life but I am sure it will make him a better adult 

    Any further help just ask
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @janer1967
                              Thank you so much for sharing this with us. Your son sounds as though he is one remarkable young man. I am pleased to hear that both his peers and school have been supportive, it is so important and I wonder whether this is the case across the country, I certainly hope so. Thank you again and I will definitely ask for help as and when if that is ok with you. Sending you and your son the warmest of wishes. Thank you. 
  • 66Mustang66Mustang Member Posts: 3,772 Disability Gamechanger
    I was in two minds as to whether to post my thoughts as a few people have been abusing the system by marking negative posts that they disagree with as spam but I'll go ahead.

    I think some people in the examples on here have been lucky with their school experiences. I found that school was horrible and that school children when in a group can be the most malicious people - alone they are not so bad - my assumption is that there is peer pressure to join in with the bullying. It was only after I left school and entered the adult world that I learnt that many adults are quite decent and not intent on harming others.

    This is just an idea but would university students be a good audience for your idea? By this age they have often matured a bit, are a bit more open minded, and are willing to take on other peoples points of view. In my experience students are also quite liberal on the whole and willing to listen to and support minority groups (such as disabled people).

    I hope you can understand where I am coming from :)
  • Dkaveney1Dkaveney1 Member Posts: 8 Connected
    I think your sharing thoughts is a great idea and also very brave.
  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,317 Disability Gamechanger
    Hi @WestHam06, I know Scope were doing something similar at one point, but having had a quick look could not see any information. @Adrian_Scope do you know if Scope still does this?

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • chiariedschiarieds Community champion Posts: 6,305 Disability Gamechanger
    Hi @WestHam06 - I see in so many different ways you wish to educate young people about disability, & applaud this. I'm also agreeing with @66Mustang in part; not that it affected me, but bullying played a part in both of my children's lives. My son opted for a 6th form college, where he met like minded young people, & his former bullies (which he'd had since primary school) had left education.
    Disability, & any other issues, would ideally be open for discussion with many children, but I concur with @66Mustang that this might be more appropriate for some students that have more maturity aged 16+ or at Uni.
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @66Mustang
                               Thank you so much for sharing your experiences with us, it takes courage to do this and I thank you for feeling able to do this, I greatly appreciate any thoughts or ideas posted. I completely agree with what you say about students feeling peer pressured to behaviour in a specific way and unfortunately that includes trying to isolate people, particularly those from minority groups. I find this really sad.  I'm sorry to hear that you had a negative experience it school, it can't of been easy for you but am pleased to hear things improved as you entered the adult world. Maturity is key and so I thank you for sharing your idea of aiming this at university students, this is definitely worth exploring  I suppose part of my thinking was to try to reach out to those who are in school now who may be struggling with a vast range of barriers that they may see as impacting their lives but thank you for the idea, it is so worth having an open conversation with older students as they may also be able to lend their thoughts and experiences to it. I hope, if you feel you would like to, we can continue to discuss the idea.  Thank you. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Geoark
                          Thank you so much for your post. Are you referring to the Scope Role Models programme? If you are, I have inquired about this before but unfortunately the programme was not running in my area and now, to my understanding, it is no longer running. I appreciate your thinking though, thank you for taking the time to reply and for asking @Adrian_Scope. Thank you. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Dkaveney1
                                Thank you for your comment, it is greatly appreciated. Thank you. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @chiarieds
                           Thank you so much for your comments and ideas, I greatly apricate them. Firstly I am sorry to hear that both your children experienced bullying, it can't have been easy for them or for you as a parent. I'm pleased to hear things improved for your son when he moved to Sixth Form, as I said to @66Mustang maturity has a key role to play and that is why I welcome the idea of aiming this at older students. I think my initial thinking was to aim this at secondary school students as I suppose my thinking is to reach out to students who may be facing difficulties right now particularly with regard to barriers which they think may impact life for long periods of time. I want to support students in seeing how barriers can be worked around whilst also acknowledging this can be hard. Aiming it at the appropriate age group is key so thank you for sharing your thoughts, it's definitely worth exploring. I think that is another aspect I am currently exploring, how best to approach it and from what angle. I greatly appreciate all of your thoughts and ideas and if you would like too, hope we can continue this discussion. Thank you. 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,492 Scope community team
    Unfortunately, the Role Models programme is not currently running. Through my working experiences with Scope and in my own personal life I have found that working with primary aged children is really beneficial to removing the 'otherness'. When my daughter started at primary school I made a point of getting elected as vice-chair of the PTA. My reasons were two-fold; I knew with my connections I could help the school and that it would be beneficial for the children and the parents to see me around the place. I would like to think that in the 5 years I performed the role that young people have carried that positive image of a disabled person forward into their secondary school life.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • newbornnewborn Member Posts: 621 Pioneering
    Good for you Richard. Very recently the mainstream t.v have begun to use presenters and characters with various disabilities,  however, it is far, far below a representative proportion.   Once, women and b.a.m.e were largely excluded too.    

    Trevor Phillips (chair of equlities commission at the time) said Disablism is institutionalised  and worse than Racism.  He could have added Ageism.  Disabled  people fracture their efforts by dividing into single disability  splinters, but do even worse by failing to unite with Age campaigns.  There is a consumer programme where, greatly daring, the  presenters are old.  But, as if they are subhuman  freaks, they can't  be in a mixed group, appearing  in a team of presenters of whatever age, but instead have been put in a caged off segregated ghetto of three old women together.   

    Thank goodness the t.v. management  haven't  made a similar segregated 'crips' show.  It would be pretty freaky if  the entire presenting team commenting on football were all women with long red hair.  Of course women of any hair style are underrepresented, especially  in sport reporting.  Nothing wrong with representative numbers at random, but obviously not all suddenly appearing in one presenting team!.

    But what is good for mobility impaired is good for everyone else, including delivery people, buggy pushers, and old or ill people, injured people, tired people, people with luggage.  A lot of old people accept failing sight, hearing, strength or mobility as an inevitable part of ageing, denying to themselves  they are disabled. But the broken pavements tip up old and young alike, and the old are more likely to break bones, so everyone needs to unite.

    Disability representation, or even male/female representation,  is sadly awry on children's  t.v., which presents a distorted world (with the occasional honorable exception)Check up on children's channels, it's like going back a century.  Adverts for girls, and programmes for girls, feature consumers spoiling the planet with plastic, in a pink glitter indoors world of fairies amd princesses and domestic lives. Male characters vastly outnumber females  outdoors and doing anything interesting or fun, or having jobs.  As with mainstream t.v., an occasional  token wheelchair user may appear.   

    It isn't something  I've seen, but is there a Mr Mcgoo cartoon where the whole point is that having accidents due to blindness  is  funny? There certainly is a nearly blind Simpson's  character whose amusement purpose is mainly to be run over.

    What example do children see? There was recently  a hit play with James Corden called One Man Two Guvnors, which was well produced and acted, and very funny, especially  (?)the bits where one character  (a waiter) has palsy, a bent spine, and repeatedly falls downstairs,  has 'hilarious' (?) trouble controlling his shaking hands and shuffling gait, and gets thrown against walls, slammed behind doors and hit by other characters,  until the highpoint where the heroes take bats and beat him unconscious  or dead, which is funny because ...... anyone who is old and /or has palsy ... what?.....should be beaten or killed????   The otherwise excellent late Victoria  Wood wrote a similar character as an older waitress, shaking, bent, shuffling, muddled......so......that calls for empathy, or for jeering?  
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Richard_Scope
                                      Thank you so much for sharing your experience with us it is greatly appreciated. I am sure that those children absolutely did carry a positive image of disabled people with them as they moved up to secondary school. I wonder if that is where some of my thinking comes from, that there are not enough role models in schools with disabilities as well as in wider society, I would really appreciate your thoughts on this. I totally agree with what you say about primary aged children, I have volunteered at a primary school and worked in early years and I have found that once children have had their questions answered they are generally very accepting. I think that is where I am coming from with aiming this at secondary school children, as for some this will be the first time they have come across disability. I am currently in the very early stages of working with my old secondary school in developing mentoring opportunities as I believe students, both disabled and able bodied, may benefit from seeing a disabled adult and hearing their experiences. I think educating students is one of the key ways forward in creating equal opportunities for all. I would greatly appreciate any further thoughts you may have on this? Please may I also ask, do you think the role models programme will start up again? Thank you. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @newborn
                           Thank you for sharing your comments. I appreciate there is a great deal of under representation of many different groups and still a long way to go until we reach equality, however, I feel we must continue to build on the progress we have made and continue to educate people where possible. @Richard_Scope has provided a shining example of how by being visible and showing that people with disabilities are capable of a wide range of roles we will continue to make progress. Yes, progress is slow in many areas of society but we must continue to prove it is absolutely the right way forward and to prove this to people who do not believe in it. I have come across much discrimination over the years and thought it hurts and that hurt runs deep, it spurs me on to prove them wrong.  I hope this makes sense. Thank you. 
  • dolfrogdolfrog Member Posts: 434 Pioneering
    @WestHam06

    A large part of the problem is the structure of the UK education system, which is not based on the international research of the last 2 or 3 decades regarding human brain development, and how we all have various stages of information processing development. I never knew any of this until i had to initially advocate for our sons communication disability during their early years, which helped me identify and understand my own life long sensory information processing disability. 
    During recent years I have set up and help run an UK based support organisation for families disability, which was disbanded about 5 years ago due to what i call disability discrimination from other organisation members who did not want to recognise my form of that specific disability, which was more due to the so called UK medical professionals who should have been explaining the various type of my communication disability but were and still are only willing to explain one of the issues that they are able to make money from by providing some form of technology. 
    Over the years i have become an information collector regarding my disability and the many related disabilities, creating research paper compilations, and sharing the links to these multiple compilations and explaining the complex nature of my families disability to those willing to listen.
    To go back to children we need to educate those running our education and health care systems as to the complex nature of all disabilities which is more about neurodiversity (we are all different, it is that some are more different than others), and then to find ways to explain these issues during the various stages of human brain development to our children who are in the various stage of our education system. 

    Keep up the good work 
  • Ami2301Ami2301 Community champion Posts: 7,006 Disability Gamechanger
    This is a really good idea @WestHam06 :) I would have loved to have seen more talks/disability awareness days during my secondary school years. I remember a lot of days/weeks being related to a variety of things, e.g. culture, countries, life skills, all sorts - but disability and anything related was never mentioned.

    I've always been old for my age (or I think the saying is too mature for my age or something) from a very early age. My niece, who starts secondary school in September, quickly adapted to me becoming disabled, she never judged, if anything, she was setting a good example of how adults should be treating me too. For this reason, I do feel primary school ages would be an ideal audience, however, I also think as children become older and more mature, more in-depth and real-life stories could have a positive impact.

    After being bullied for all of my school life (I wasn't disabled until the age of 22) I realised judgement was the core of most of why I was bullied - I would love to see more beint done to break down stigma, remove judgement and promote equality. We learn about religion, different languages, sex, relationships, disability should be up there too!

    Thats my two penny's worth :) 
    Community Champion
    Disability Gamechanger - 2019
  • Richard_ScopeRichard_Scope Community Team Posts: 2,492 Scope community team
    WestHam06 said:
    Hi @Richard_Scope
                                      Thank you so much for sharing your experience with us it is greatly appreciated. I am sure that those children absolutely did carry a positive image of disabled people with them as they moved up to secondary school. I wonder if that is where some of my thinking comes from, that there are not enough role models in schools with disabilities as well as in wider society, I would really appreciate your thoughts on this. I totally agree with what you say about primary aged children, I have volunteered at a primary school and worked in early years and I have found that once children have had their questions answered they are generally very accepting. I think that is where I am coming from with aiming this at secondary school children, as for some this will be the first time they have come across disability. I am currently in the very early stages of working with my old secondary school in developing mentoring opportunities as I believe students, both disabled and able bodied, may benefit from seeing a disabled adult and hearing their experiences. I think educating students is one of the key ways forward in creating equal opportunities for all. I would greatly appreciate any further thoughts you may have on this? Please may I also ask, do you think the role models programme will start up again? Thank you. 
    I agree that there aren't enough disabled role models anywhere really. I certainly can't think of a single one from my childhood. I have found that being visible in your local community is really helpful (I appreciate that this is easy for all of us) and being willing and open to answer the difficult and sometimes awkward questions. Even for adults, you might be the first disabled person that they have interacted with. This is just my personal view but I see people asking me questions as an opportunity to educate. Idon't find it offensive but I get that some disabled people do.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @dolfrog
                        Thank you so much for sharing your experiences with us, it is greatly appreciated. It is really useful to gain a wider understanding of what other people are doing to push disability equality including understanding disability to the top of the agenda in whatever form that may be. I'm very new to this and in the very early stages so it is very much a learning opportunity which I hope I can develop into something positive.  I am sorry to hear of the difficulties that you have faced but applaud you in your determination to try to educate various different sectors about the complexity of disabilities and how we are all different. I think we need more role models out there in society who have real life experiences of a variety of disabilities to help inform the change that is needed. As I say, I believe educating people is a key way to remove prejudice and discrimination though I do acknowledge not the only one and that it is not easy. I really hope that you continue with the work you are doing and wish you the best of luck with it. Please, if you would like to, I hope we can keep this conversation going. Thank you.  
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Ami2301
                            Thank you so much for sharing your experiences with us, it is greatly appreciated and I for one am so pleased you put two penny's worth in :) You really do speak so much sense and I totally agree with what you say about being at secondary school and having days dedicated to a wide range of things but disability not really ever being involved with this. I'm really sorry to hear that you were bullied throughout your whole school life, that is not nice and can't of been easy. I agree a lot of the problem is that there is still so much stigma and pre-judgement and people can be cruel purely because they perceive that a person doesn't fit their 'mould' of how a person should be whether that be due to how they look, what interests the person or much else. I really hope that change can come about but it is something that has been spoken about for many years and though progress has been made it clearly has not been fast enough nor has it adapted to changes in society such as social media. I know that once I had done my talks at school some of the students communicated with me differently and I think they felt more comfortable to talk to me or ask questions. I also hear what you say with regard to your niece adapting to your disability and showing an example to adults, I think in general children do adapt better to changes and also are more accepting. Earlier in this post @janer1967 spoke of her inspiring son and how he adapted to the new situation, children are resilient and accepting and once they have information and see role models I would hope it can change attitudes that might otherwise have developed. It is also about giving other disabled students a role model to show them that, though it is difficult, disability does not have to define you and there are opportunities out there. I do hope to continue this conversation, and please if you would like too, would really like to hear more of your thoughts as it sounds as though you have much insight to share. Thank you.   
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Richard_Scope
                                     I can't really think of any disabled role models either from my childhood. I was the only physically disabled student at my primary school until Year 6 and unfortunately I later learned that the other child who joined the school left due to a reluctance by the headteacher to embrace their disability. I completely agree being visible can really help to change and inform opinions and as I have become older acknowledge the importance of people asking me questions. I really appreciate it when they ask me and not someone I am with.  Thank you.   
  • dolfrogdolfrog Member Posts: 434 Pioneering
    @WestHam06
    If the UK education system was inline with international neurological research, then based on how the human brain develops and the various stages of maturation, formal education should begin from between the ages of 7 - 8 years old. And various neurological systems are not fully developed until the late teens, or early 20s. Each individual is different, and can develop different neurological skills at different times (ages) and at different rates. There is on one size fits all. And normal is pure a statistical term base on any sample mean value.
    Some years ago I used to edit Wikipedia articles (more the supporting research rather then the content you read) and as such I was provided with a Wikipedia User page, which I used to list some of my Research paper collections regarding Invisible Disabilities. You might like to have a look at my Wikipedia user page at 
    https://en.wikipedia.org/wiki/User:Dolfrog 

    I also used to run a some Research Paper Groups on the old CiteULike research network which was wound up at the end of March 2019. I transferred some of the research paper collection to an alternative web site a Zotero. Which has a different site structure and layout compared with CiteULike. You could create your own account to compile useful information. I use Evernote to help me work around my dyslexia issues, and I have an Evernote web page which has links to my Zotero research paper collections which you may find of some interest at 
    https://www.evernote.com/shard/s329/sh/f6711c86-87ce-4f2a-a6dc-a7df6fadcf2b/71d49aa42e81f7338d2812d10974e445 

    I hope you find some of the information useful.
    Keep up the good work
  • Denise11Denise11 Member Posts: 97 Pioneering
    I think that your ideas are very, very good and I would  loved to help, although I did go to a school which was for disabled.  Young children have no ask things that older people find difficult and giving them time to ask questions and understanding is brilliant!  
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @dolfrog
                         Thank you so much for sharing this information, it is greatly appreciated. I will be sure to take a look at the links you have provided. Many thanks. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Denise11
                            Thank you so much for sharing your experiences with us, it is greatly appreciated. I agree I think younger children feel more comfortable with asking questions and they are quite accepting once things are explained to them. I believe they is a place for this type of thing in different types of educational settings and it's about getting the presentation and conversation suitable for the different audiences. I also believe everyone has something to offer regardless of the type of educational setting they attended. Thank you.  
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi all, 
              I hope everyone is well and I would like to thank you all for sharing your contributions with us, I greatly appreciate all of the insights people have shared in this conversation, thank you. Please, if I may, I wondered if I could ask  you all a question and would greatly appreciate any answers you feel able to give, thank you. My question is 'What does achievement mean to you'? Thank you.  
  • newbornnewborn Member Posts: 621 Pioneering
    Staying alive?
  • amyhutchinson_12amyhutchinson_12 Member Posts: 8 Connected
    WestHam06 said:
    Hi all, 
              I hope everyone is well and I would like to thank you all for sharing your contributions with us, I greatly appreciate all of the insights people have shared in this conversation, thank you. Please, if I may, I wondered if I could ask  you all a question and would greatly appreciate any answers you feel able to give, thank you. My question is 'What does achievement mean to you'? Thank you.  
    I think that getting to university has been my biggest achievement and it is challenging me in so many ways in terms of reading and focusing due to my visual impairment, but I do love university. Getting into university, my 'achievement', means that i am far more than my disability (although i do have quite a lot of vision, it still does affect me a lot). 

    Unfortunately at university though, i have been through what is considered as a 'bullying' situation. Coincidentally, i am actually studying a special needs and disability degree but my group were doing a small presentation during our first year, and we were sitting right at the back of the room. What we were meant to be doing was on the interactive board at the front but i couldn't read it, but i didn't have enough confidence to say that i couldn't read it or go up to the board and read it as i was embarrassed about saying so and standing in front of the board and possibly getting in the way. This unfortunately led to my classmate bullying me via our group chat on facebook by telling me, in front of the others, everything she'd gone through and telling me that what i went through was 'nothing' and i have been very uncomfortable with her since. My tutor told me that i could have 'asked her or asked someone else or gone up to the board' but what people don't understand is that i don't like doing that because i don't want to rely on people, but then my friends brought up a good point that i should not be expected to do that, to tell them because they should know. 

    Luckily, prior to university, i had not been through bullying and actually had quite a few funny experiences during high school where during exams before i went into a separate room and was doing my exams in our main hall with everyone else, i had enlarged papers and my friends were always saying 'woah, you have such a big paper!' and we just laughed about it because it was huge, and they actually found it fascinating! 

    I think that raising awareness in educational settings about disability is really important. I would love to have the confidence to talk about it in somewhere like a primary school where they are at early ages but they may not understand. High schoolers can be quite inattentive sometimes so i think i agree with everyone else, that students like university and college students may be the best option as they usually seem to be more mature and understand more too. 

    Sorry for the long post! 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @amyhutchinson_12
                                           Thank you for sharing your experiences with us, it is greatly appreciated. Awesome, a degree in Special Needs and Disability, I bet that is really interesting. Please may I ask, what career path are you considering following finishing your degree? I am pleased to hear that you regard going to university as an achievement, good for you and I hear what you say when you explain that it means you are far more than your disability. I am sorry to hear of the experience you had in your first year, you would have thought given the subject content people would have had a little more empathy and understanding. You are right when you and your friends say that you should not have to ask, that people should be more aware of everyone's individual needs within the group. I also find it difficult when people try to compare experiences, everyone is individual and unique and face their own personal battles. I am pleased to hear though that you had positive experiences during high school and that friends took a positive interest. Laughter is the best :) Thank you for sharing your thoughts, it has been really interesting to get different people's perspectives and I think one thing I am learning is that there is potential for this type of thing at every level of education. I am trying to find the most appropriate way forward so all of the thoughts people are sharing on here is greatly appreciated. Please do continue to share your thoughts if you would like too. Thank you. 
  • amyhutchinson_12amyhutchinson_12 Member Posts: 8 Connected
    WestHam06 said:
    Hi @amyhutchinson_12
                                           Thank you for sharing your experiences with us, it is greatly appreciated. Awesome, a degree in Special Needs and Disability, I bet that is really interesting. Please may I ask, what career path are you considering following finishing your degree? I am pleased to hear that you regard going to university as an achievement, good for you and I hear what you say when you explain that it means you are far more than your disability. I am sorry to hear of the experience you had in your first year, you would have thought given the subject content people would have had a little more empathy and understanding. You are right when you and your friends say that you should not have to ask, that people should be more aware of everyone's individual needs within the group. I also find it difficult when people try to compare experiences, everyone is individual and unique and face their own personal battles. I am pleased to hear though that you had positive experiences during high school and that friends took a positive interest. Laughter is the best :) Thank you for sharing your thoughts, it has been really interesting to get different people's perspectives and I think one thing I am learning is that there is potential for this type of thing at every level of education. I am trying to find the most appropriate way forward so all of the thoughts people are sharing on here is greatly appreciated. Please do continue to share your thoughts if you would like too. Thank you. 
    I am unsure of what to do after my degree. I returned to my primary school back in February to complete my first placement there and loved it so I may work as a teaching assistant there if that will be possible by the time i finish my degree but i am not certain on this and that will also obviously depend on if they need anyone like that there. I do also have the thought of working with people with visual impairments due to personal experience, but I am not sure how that would work in terms of what places I could look at to do this.

    As I look back on high school now, I am surprised that I did not have any bad experiences there in comparison to university with my disability as the irony is in my last comment: students are more mature than high school students. Yet, in my case, high school students were more tolerant of my disability and were nice about it. I loved it when they joked about how big my exam papers were because it was funny 😂


  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @amyhutchinson_12
                                           Both of those ideas sound great and I wish you the very best with whatever career path you choose to follow. Either way, with both your knowledge and personal experience, I am sure you will be brilliant. Earlier in this thread, we spoke of the need for there to be more disabled role models out there in society so I am really inspired by what you are doing and what plans you may choose to explore. I guess every person's experiences will be different but at the end of the day no person should have a bad experience because of their disability and I am sad that so many people do. I would like to thank you for sharing your experiences as it has highlighted that there is a need for education on disability at all levels of the education system. Thank you.
  • amyhutchinson_12amyhutchinson_12 Member Posts: 8 Connected
    WestHam06 said:
    Hi @amyhutchinson_12
                                           Both of those ideas sound great and I wish you the very best with whatever career path you choose to follow. Either way, with both your knowledge and personal experience, I am sure you will be brilliant. Earlier in this thread, we spoke of the need for there to be more disabled role models out there in society so I am really inspired by what you are doing and what plans you may choose to explore. I guess every person's experiences will be different but at the end of the day no person should have a bad experience because of their disability and I am sad that so many people do. I would like to thank you for sharing your experiences as it has highlighted that there is a need for education on disability at all levels of the education system. Thank you.
    You are welcome. Doing a disability degree has given me more opportunities to understand disability and although it may not give complete in depth knowledge and may be biased at times, it has allowed me to learn about conditions that i never knew existed and made me more knowledgeable. I am glad that my experience has shown that there should be education on disability at all levels and obviously there will be different ways of learning for different ages, but it should be done. I think that going around schools and discussing about disability is an amazing idea, I just wish i had the confidence to do it! 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Thank you @amyhutchinson_12, I greatly appreciate it. That sounds like an amazing course, with lots of learning opportunities, I wish you the best of luck with it. Your experience has enable me to reflect and learn as well as think about how we can best address these issues with different age groups so I really thank you for sharing these with us. Obviously, currently I can only speak from experience but they are many different disabilities and they all deserve equal understanding and awareness. It has given me lots to think about. Thank you. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @dolfrog
                        Hope you are well. I just wanted to say I haven't forgot about the papers you so kindly shared with me, I am getting there and will definitely get back to you to talk through elements of them with you please if that is ok, but want to ensure I have given them the time they deserve. Thank you.
  • dolfrogdolfrog Member Posts: 434 Pioneering
    edited August 2020
    Hi @WestHam06
    Long Story, I had some flu type issues which were corvid negative,
    I had a week of headaches etc. And getting old does not help overcome these issues lol. 
    I am currently going through my 2011 collection of bookmarks on Diggo about a 1000 lol, which includes many research papers. This was the result of having to move from one bookmark web site to another, as my initial site was closing down lol.
    I did not realise i had transferred so many links lol.
    it keeps me busy lol.


  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @dolfrog
                        Well I hope that you are feeling better and I look forward to talking elements of the research papers through with you at some stage. Thank you and best wishes. 
  • dolfrogdolfrog Member Posts: 434 Pioneering
    Hi @WestHam06

    I rediscovered this compilation of research links some of which you may find of some interest.
    They go back to when i was trying to help our sons when they were in the education system, trying to understand the wide range of issues, and how to explain their disabilities in relation to other issues.
    The compilation of links is at Bookmax 
    https://public.bookmax.net/users/dolfrog/bookmarks 
    Keep up the good work
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Thank you @dolfrog, I greatly appreciate all of the support you are giving me. I will be sure to take a look. Thank you. 
  • Cher_ScopeCher_Scope Community Team Posts: 2,450 Disability Gamechanger
    Hi @WestHam06 I just wanted to add that I thought achievement was not material things but living by our values and what makes us happy.  This varies from person to person doesn't it? 

    I also really admire your ambition of educating people about different bodies.  Education is so crucial to this and nipping in the bud non-disabled bias and privilege.  We need voices like yours out there so go you!! :)
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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Cher_Scope
                                How are you? It's great to meet you and thank you so much for your kind words, I greatly appreciate it. I agree with what you say about achievement, I feel society puts far too much emphasis on achievement being based on material things and how it is all about bigger and better. Some of my greatest achievements are what many people probably just take for granted. I think that because society is like this it can make many people feel like they are not good enough and will never reach what society perceives as being an 'achiever'. I appreciate that this is just my opinion and other may not agree but as you say achievement and what it means varies from person to person and I think that is exactly how it should be.  I am in complete agreement with you education is crucial as there are so many opportunities from this, I just hope I can make it possible, I am very determined too. I think for me it is ensuring I do it the right way and give it the justice that it deserves. Thank you. 
  • Cher_ScopeCher_Scope Community Team Posts: 2,450 Disability Gamechanger
    @WestHam06
    I'm good thank you,! It's likewise lovely to meet you.  I am very much of the same opinion.  Most of us grow up believing we should have things done by certain ages - houses, family, education but it really is fine to do things your own way, at your own speed.  The older I get, the more I learn that achievement is subjective and as long as we are content with our own path that's all that matters :)  
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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Cher_Scope
                                 Completely agree with all that you have said, I often describe myself as 'a leaf blowing in the wind' and when the time is right I will settle in whatever way that may be. I feel that I have rediscovered my passion and who knows this could lead to some really great opportunities. I have this saying 'My disability is how I am not who I am'. I want to ensure that I create memories along the way. Thank you. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @dolfrog
                         How are you? Thank you so much for sharing your research papers with us, they are really interesting, I continue to read the abstracts of the papers. Please may I ask how do you carry the research out? Thank you. 
  • dolfrogdolfrog Member Posts: 434 Pioneering
    edited August 2020
    Hi @WestHam06
    I have been going though quite a bit of stress in recent times, which is related to the lack of awareness and understanding of my families disability.

    The research :-
    Back to the late 1990s our  sons were having problem in the education system, and after about 5 years of miss diagnosis one of our sons was diagnosd has having what was then called Central Auditory Processing Disorder (CAPD) one of the first children in the UK to diagnosed as having CAPD. I went online to find out what CAPD was to understand the issues so that we could explain them to his teachers, family, and friends, 
    I found a USA CAPD support group run by an audiologist, after a short while I realised that I had been living with CAPD all of my life, and it explained my life path. The only problem was due to the stigmer, no adults were willing to admit that they had CAPD or were willing to discuss their life long experiences. I later found out that the audiologist who ran the group also had CAPD. after being in the group for a few months i was explain to the other members the problems of living with CAPD, and possible ways of working around it.
    Some how UK researchers became aware of my activities and asked me to set up a support group so that the UK Medical Research Council (MRC) could get government funding for a 5 year (what was then called Auditory Processing Disorder (APD) the Central was dropped in 2000) APD research program. During this time I attended many lecture and presentation by leading UK Researchers and Consultants mainly by invitation. 
    I set up APDUK in 2002-2003 and the MRC got their funding in 2004. As part of my qualification for sunning a UK support agency I was assessed and diagnosed as having APD, which took well over half a day there were so many tests. One of which the Random Gap Detection Test, which measures the size of gap between sounds you can process, which at the time did not include a gap large enough to process, explained my dyslexia and why I have problems processing fast speech. 
    As part of running APDUK I was in touch with the leading MRC research team, and after a while (they sis not say this) but they got fed up with me asking which to them were silly questions regarding audiology. So they sent me come copies of their recent research papers. It took me 3 months to read the first paper, working out the meaning of the very new terminology, and how what was mentioned related to many other issues. They suggested I use PubMed and other online research paper libraries to find research to help explain these issues. So began to create my online PubMed research paper collections when say some one asked about some related issues etc.  
    A friend of mine in the USA who also has APD created an Wikipedia APD article and asked me to help provide the supporting international research to explain the various issues described in his article. ( due to my type of APD and dyslexia I am not very good at typing text that most see, but i can find the research based supporting information) So I became a Wikipedia editor (USER) during which time I added support research to many articles, and changed a few to include the correct information in line with the current international research. I spent about 5 years doing that. But it became too stressful as those marketing their preferred money making concepts became for me too discriminatory.
    Add to which a few so called leading UK researchers did not and still do not want APD to be recognised as it conflicts with their career marketing needs, one even denied that my clinically diagnosed APD existed at a committee meeting I attended, and another researcher has been marketing that APD does not exist on Twitter, until I found out about 2 years ago.
    So I have to use research to explain my families communication disability, and to prove the incompetence and negligence of some who only want to market their research and therapy program providing careers and deny the existence of my families disability. 
    Until I was in my 50s I did nor even know i could read research papers lol.

    You could have a look at My Pearltrees full research paper collections which are listed journal by journal, as useful starting point is the Auditory Processing Disorder page. There is also in the top menu an UP ARROW, which takes you  to the main page listing the journals 
    https://www.pearltrees.com/dolfrog/auditory-processing-disorder/id14354526 
    the papers cover a wide range of issues.

    Sorry to ramble on so, but it is what i do sometimes lol.
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @dolfrog
                         Firstly, I am sorry to hear that you have had a stressful time in recent months, I do hope things start to improve for you, please may I ask do you feel that you receive any support? Wow, that is amazing and sounds so interesting. It is great that we have people like yourself who are willing to go out and there and try to find out more in order to be able to support yourself and your children to live the life you would like to live with the disabilities that you have. I would like to thank you for doing this and greatly respect you for it. Please may I ask, are you still in contact from the support group in the USA? I am keen to continue to read your research papers and learn about Auditory Processing Disorder as this is a disability I am not familiar with. I am also saddened to hear of researchers wanting to use marketing for the best financial gain as possible, to my knowledge and understanding, which I admit is very little, this is not what research is about. I am also sorry to hear of people denying this disability exists but please do continue to educate and thank you for sharing with us as this is an opportunity for people to learn and in turn help to raise awareness. Best wishes, thank you. 
  • dolfrogdolfrog Member Posts: 434 Pioneering
    Hi @WestHam06

    My sleep pattern has completely gone, i have been going anything up to 30-40 hours without sleep, which is very much related to your first question.
    i thought it would be best for me to answer your questions one post at a time.
    So your first question "Do you feel that you receive any support?"

    Not really, the Medical Research Council (MRC) recommended a multi-discipline support team for those of us who have Auditory Processing Disorder (APD) made up of an Audiologist, a Speech and Language Therapist, and a Psychologist.
    Currently our local NHS Trust Audiologists, only want to provide hearing aids, the psychologists do not want APD to exist as it is the main underlying cause of the dyslexia symptom which they gain income from diagnosing as a condition.
    I have had some support in the last 2 years form a Speech and Language Therapist, who is still learning about APD.

    The problem is that our three sons my wife and I all have a clinical diagnosis of having Auditory Processing Disorder, and post diagnosis we have very little or no support from the so called medical professions who should be trained and qualified to understand, explain the issues, and provide support to those of us who have Auditory Processing Disorder, but for most of the time we have only come across medical professional negligence which causes high levels of anxiety and stress, and the feeling that they do not want to even begin to understand our life long communication disability. 
  • dolfrogdolfrog Member Posts: 434 Pioneering
    edited September 2020
    Hi @WestHam06

    Your second question "Are you still in contact from the support group in the USA?"

    The USA group that I  joined back in the 1990s no longer exists, in 2000 there was a USA symposium which changed what had previously been called  Central Auditory Processing Disorder (CAPD) to Auditory Processing Disorder (APD) to help explain the wider range of issues that research was identifying, that can cause the brain to have problems processing the sounds that the ears hear. 
    Although the symposium created a wider and  better explanation of the causes of the problems causing the brain to have problems processing the sounds the ears hear. The research which created this wider explanation was done by different  research bodies around the USA. 
    And not all USA audiologists and other support professionals were willing to accept the new wider definitions and assessment tests as there were new overlaps with other related areas such as dyslexia and speech and language issues.
    And for some these  USA based reasons the groups support professional were not able to agree regarding the new definitions and explanations of APD.
    However I still have contact with some who were members of group.

    I did start an adult APD support group on Yahoo back in 2000, the OldAPDs which had adult members who had APD and also some international researchers interesting in understanding living with APD including audiologist, speech and language researchers and psychologists. 
    During the 2000s the some of the group members participated in an online APD research program investigating living with APD, run by an Australian Psychologist, Damien Howard, and two of the resulting articles "Controlling the Chaos" and The Trouble with Strangers" can be downloaded from his web site at 
    http://www.eartroubles.com/articles.html (half way down the page) 
    Yahoo made some structural changes to all of their groups at the end of 2019, which made the group APD unfriendly by deleting all of the post history and the information folders. So we deleted the group earlier this year.

    I currently have a Facebook APD support group, which i started in 2009, the membership includes adults who have APD, parents of children who may have or have been diagnosed as having APD, audiologists, teachers, speech and language, psychologists etc. 
    Currently there are just over 16,000 members of my Facebook APD group.
  • dolfrogdolfrog Member Posts: 434 Pioneering
    Hi @WestHam06

    your third question was "I am also saddened to hear of researchers wanting to use marketing for the best financial gain as possible, to my knowledge and understanding, which I admit is very little, this is not what research is about." 
     
    It is not what research should be about. However research has to be funded, and some of those who provide the funding can have a specific a marketing interest. 
    Some research regarding therapies and programs is funded to demonstrate and explain how a therapy / program can help a specific group of individuals. Unfortunately there was a program related to my disability which was funded and marketed in this way. 

    There was some initial research done to explain that it could help those who have APD back in the 1990s, however the university where the research was carried out decided to market the program with more positive research, and even having students telephone marketing the program; the university benefited financially which it used to radically improve its facilities, new buildings etc. The program when assessed by international researchers using Gold Standard "Randomised Control Trials" failed to demonstrate to provide any long term benefit for those who have APD.  

    And another program provider used its own marketing department to create what it called International "Disability" Association to support those who may have that disability and recommending its program as the best form of support. 

    However International Research now has a new Gold Standard "Randomised Control Trails" which require in depth research structures to investigate the effectiveness of a program, unfortunately it also requires a great deal of funding.  

  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @dolfrog
                        Thank you for answering my questions. I am sorry to hear of your recent struggles with your sleep pattern, how are things now? I will definitely read the two articles by Damian Howard that you kindly shared with us and will continue to expand my knowledge on APD. If you don't mind, this may involve me asking you questions if I please may. Thank you.  
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