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Win a book: post the things people say to parents of disabled children…

alexwhitealexwhite Posts: 193Administrator, Helpline Scope community team
edited February 16 in Parents and carers

Letter to Louis by Alison White , a mother of a child with cerebral palsy, is published by Faber today.

One of the things that we found most shocking about the book is the callousness or perhaps carelessness of people’s reactions to a mother with a disabled child:

  • A fellow mum talking about how ‘perfect’ her own child is.
  • The nurse who calls Alison ‘Ermintrude’ when she brings her expressed milk to the intensive care baby unit.
  • “Look at him. That’s an apology, that is!” says another nurse.
  • From Louis’s own grandmother: “There’s something not quite right about him. He’s not like any baby I’ve come across before.”
  • The homeopath who attributes Louis’s cerebral palsy to his father not being present at the birth.
  • The shoe shop worker who says that it is not her company’s policy to sell shoes to people who cannot walk in them!

We have 10 copies of the book to give away to online community members.

To be in the draw, post the things people say to parents of disabled children…


  • wildlifewildlife Posts: 1,117Member Chatterbox
    We adopted 2 boys with disabilities that caused aggressive/self harming behaviour. Whilst visiting my sister and her family in New Zealand where one of my sons exhibited this behaviour, my niece declared "It's the way they were brought up". This seems insignificant but upset me a lot especially as she hadn't even seen our family for many years and knew nothing about us. My sister was present and I looked at her to back me up but she remained quiet. That also hurt a lot.
  • dubsdubs Posts: 2Member Listener
    “God gives these children to parents who can cope with them”(woman outside church nursery that we went to).......”Never had this(autism)back in my day” (that was my own dad)........”I know what i would do if he were mine”(my son was having a meltdown and that was a comment from a passerby)........The special education school that my son attended shared the grounds with a mainstream primary,while waiting for ours to come out a mainstream parent went past with her child who asked her mum “what school is this?”,to which she replied “it’s the school for naughty children”,at nursery I was ‘encouraged’ by the leader not to have my son take part in the Nativity,saying it would be too stressful,to my shame I agreed,but I’m pretty sure that there may have been comments from other parents that may have made this happen,so I never got a Nativity with my only child(although she did take a pic with him holding a star they had made the day before).......I could go on but I I don’t want to let it eat away at me/us,we’ve come a long way since then and still got a way to go,it’s a longer road we have to travel but we will get there xxxxx
  • kieransmumkieransmum Posts: 11Member Whisperer
    When my son was diagnosed with CP my dad said "well he didn't get it from me"
    Also when people say it's not that bad he can walk. So frustrating. I'm very thankful he can walk. But not thankful for the pain and fatigue he battles daily.
  • NystagmiteNystagmite Posts: 564Member Chatterbox
    dubs said:
    ”Never had this(autism)back in my day” (that was my own dad)........
    I've heard this many times before. I have a friend who is 70. He told me growing up, he had a friend with Autism. But it was (as you probably know) in the days when it was just those who didn't talk / had behaviour difficulties were diagnosed.

    I have been told (as a disabled person) there are certain, everyday things I shouldn't be doing. Funny how I've been pretty much encouraged to do those things and don't, with some minor adjustments, actually have any difficulties doing them. Talking to some parents of disabled children, their opinion (apart from safety stuff) is that they encourage their child to do normal everyday things and it's the child who decides whether they should do them.
  • DoogiexxDoogiexx Posts: 6Member Listener
    edited February 3
    My son is now 19, with a progressive muscle wasting condition, he was diagnosed age 5 and we were told life expectancy is teens / early twenties. 

    'Everything happens for a reason'. Seriously?

    'I don't know how you do it.' You are presuming that I do.  I don't have a choice here but to wake up every day and carry on.

    'Boys with your son's condition know they are going to die young, and they don't worry about it, its the parents who don't cope.' How do you respond to that (without using physical violence).  This gem was from my mother in law after the death of a friends son, who has the same condition as my son. My son knew him.  He certainly does worry about it.
    One friend phoned me, crying as her 16 year old son's dentist had told them hes to have a sugar free diet; she said 'you have no idea how hard it is, trying to find products he can actually have, and telling him he cant have the things he likes any more'.  Well, I have a daughter with a life threatening nut allergy, who stops breathing if a trace of nuts is in something she eats; a son with ADHD and food intolerances, and another son with a progressive life limiting condition unlikely to see his 25th birthday and facing losing the ability to swallow food.  Sometimes its hard to show sympathy.

    'No son of mine is going to be in a wheelchair.' Um... well.... anyway, that was from my now ex, and yes, his son is in one...

    'What was the point of school including your son in that sex education lesson?' As if obviously people with impairments don't have sex... (another gem from my mother in law)

    'This piece of equipment is on loan for your son.  Please sign this form to agree to return it um.. *cough*... when your son ... um...no longer needs it.' I smiled, signed the dumb form, showed him out of my home, then cried for the rest of the day.

    'He wont be able to do (insert action/job/ability here)'  Uh... yes, he will; if he wants to, we will find a way.

    'Has he finished with his plate?' waitress in a restaurant. 'I dont know, J, have you finished with your plate?' 'Yes thanks' . Me to waitress: 'He said yes thanks.'

    At a security check point of a large public event last summer, when everyone else's bags and coats were being checked, my son reached the front of the queue, to be told 'Oh, its fine son, you go on through' despite the fact he had a massive rucksack on the back of his powerchair. 

    At a holiday cottage booked 18 months in advance. 'Ah, when I said we are wheelchair FRIENDLY, I didn't mean we are wheelchair accessible as such.  If your son can get his powerchair up these 2 steps, we have all wide doorways inside.' 
  • DylanEvansDylanEvans Posts: 16Member Whisperer
    Doogiexx said:
    'Has he finished with his plate?' waitress in a restaurant. 'I dont know, J, have you finished with your plate?' 'Yes thanks' . Me to waitress: 'He said yes thanks.'
    GOD, I hate this! My parents and I had/have a very similar strategy for what my dad calls "does he take sugar?" questions. Perhaps it's petty of me, but I do enjoy making people squirm when they do it.
  • DylanEvansDylanEvans Posts: 16Member Whisperer
    During a transition meeting when I was about to go into high school (I was, as far as I know, the first wheelchair user to attend my high school), we mentioned that laying the groundwork for me would make it easier for others later. The SENCO then said, and I quote, "oh no, we couldn't take another one".

    Shortly after I got to high school, one of the PE teachers said "so what is it again, MS?". I have CP. Apparently two-letter abbreviations are tricky to tell apart.
  • ZeezeeZeezee Posts: 58Member Talkative
    I have been torn between laughing and crying at these posts because in the nearly 4yrs my daughter has been with me I have actually heard most of them first hand. But I now leave my daughter to deal with people's ignorance herself as she does it so much better than me. When people say"I like your car" she looks at them like they are stupid and replies"it's a wheelchair not a car" Her favourite saying at the moment when people speak to her like she is a baby"hi my name is ziyal and I have quadriplegic cerebral palsy" she then sneaks me a sly smile and enjoys watching them squirm. If people speak to her age appropriately she just has a general conversation with them but if they patronise her then god help them. This is why I leave her to it now especially as she tells me to go away when I try to stick up for her and I end up getting on the wrong end of her tongue and like I said she does it so much better than me.
  • NystagmiteNystagmite Posts: 564Member Chatterbox
    On the subject of talking and generally being patronising, I once told someone I was visually impaired. She then started talking me really slowly. Until I told her that, she talked to me normally. Utterly bizarre.

    You do now have to talk to me slightly slowly because of my processing difficulties.

    I have also been told I can't have certain diagnoses for some strange reasons, including "I may have a relative with that and you're nothing like him" and "you're visually impaired. You can't be deaf too". Um, there are conditions that cause both.
  • jaycee6jaycee6 Posts: 40Member Whisperer
    OK maybe i was paranoid when my daughter with downs was little,People often stared at her in her pushchair,One day a man was passing by he just stared as he walked passed ,I stared back at him he still didn't stop. I had the last laugh as he walked into a lamppost ive never forgot it that was 20 years ago, Also i was annoyed when i met a woman i hadn't seen for years,I told her i had a daughter with downs,She said my daughter in law has one of those ,and its not from my side of the family. I was fuming .
  • DoogiexxDoogiexx Posts: 6Member Listener
    '...has one of those..' how did you stop yourself from wringing her neck?? 
  • nicw3nicw3 Posts: 3Member Listener
    When my son was very recently diagnosed with Aspergers the first thing that his Grandma asked was 'will he ever get married?' Hmmmm I wonder if that's my first concern for him?!!!!!

  • GeoarkGeoark Posts: 758Member, Community champion Chatterbox
    I attended a parent support meeting run by our local CAHMS for parents with teenage autistic children.

    'I think our children should be steralised so they cannot have more kids like them'
    My response was to ask her when she had been steralised, but she didn't get it.

    Same parent said 'they should be discouraged from having sex'.
    My response was that I wanted my daughter to have a full life, including sex be it with a man or woman (she was questioning her sexual preference at the time) but a few people thought this was disgusting.

    One of my favourites
    'Your daughter obviously has a lot of needs which we do not have the resources for. So we will not be offering her a place but I wanted to meet you so that I could get your detail and report you.'
    My response 'Thank you however I would not like my daughter to go to a school with a head teacher who is so small minded and bigotted.'

    Years later, when my daughter was doing her A levels, I was at a council community meeting when a councillor friend introduced me to the same head teacher. They were looking for school governor with some SEN knowledge and she was charming and made her school sound so good. In then end I had enough and told them unfortunately I did not think I would be a good match. I then explained to my friend my previous meeting with this person, the look on her face when she realised who I was, was priceless.

    'It is sad that she won't realise her dream to go to university' from a family friend when we were discussing her diagnosis. My daughter had the last say when she showed her degree. 'See dreams can come true.'

    'Yes, but he has a real condition.' A comment from my mother when comparing my daughter with my sister's son. It was also one of the last times we bothered to go see her.

    My sister later told me family is important, I agreed but pointed out this is my family! (Wife and daughter).

    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!

  • alexwhitealexwhite Posts: 193Administrator, Helpline Scope community team
    Many thanks for all your posts. I will be emailing the winners of the books shortly, Alex
  • soozsooz Posts: 13Member Listener
    (Disabled single mum with adopted autistic son)

    ”what’s wrong with him then?”
    ”don’t adopt, you just get other people’s rubbish”
    ”what would happen if you really told him off?”after I’d been telling friends about a recent meltdown.
    ”parents these days just make up these conditions to get benefits”
    ”does he get this from his real mum?”

    sad isn’t It?
  • alexwhitealexwhite Posts: 193Administrator, Helpline Scope community team
    Hi @Sooz, @kieransmum, @Nystagmite, @Zeezee, @jaycee6 and @nicw3 ;

    I have emailed you and asked for your address to send you a book. Please email editor@scope.org.uk so I can send you one!

    Best wishes, Alex
  • alexwhitealexwhite Posts: 193Administrator, Helpline Scope community team
    Apologies to Jen and Nic - found your addresses now!

  • alexwhitealexwhite Posts: 193Administrator, Helpline Scope community team
    Faber has posted the books to the winners - please email me to let me know you received it!

    Best wishes, Alex
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