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"You don't look disabled"?

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  • o5jessica
    o5jessica Community member Posts: 42 Connected
    DavidJ said:
    @bevt2017
    Hi 
    “You don’t look disabled”!!!
    Yes Bev bear this phrase almost every day !! I have been disabled now for almost twenty years so I am well versed with that phrase . 
    I have all four limbs and can stand upright for short periods but I don’t look disabled!! When you think about it it has to be the most stupid phrase ever uttered  ! It must be a throwback to the time disabled people had parts missing I think !
    I did a training session once for Council employees on disability . My party trick was to get out of my wheelchair and sit on a normal seat next to it . When they came into the room I asked them who was disabled . Everyone said the person who uses that chair. So I slid across the seat and sat in the wheelchair and asked the same question . The looks on their faces was priceless. So when I am in the chair I am disabled get out of it I am not because I don’t “look” disabled
    I have to confess I don’t know what a disabled person looks like either because we are all different and have different disabilities . Some are visible and some are invisible .
    Its the staters ignorance  Bev and you have to learn to ignore it . No matter where you go there is always one ignorant person and they are not with worrying about it . Those close to you know and so do you and that’s all that matters # developthickskin!!
    In time you’ll notice that they look over your head height rather than look at you !!
    @ David hi, you so right, I had years of this ,I used to take part in disabled froums local council, did I got run over,then I got comments from even disabled people in the meeting. Cause my large wheelchair. 
    Yet my days modelling pr I reminder my self , that words  they used Hurt me lot, 
    Each I sensed had problems seeing me now in wheelchair, 
    I stop going as I got much harder to cope yet good on you , you made me laugh today x
  • Mum72
    Mum72 Community member Posts: 8 Listener
    My son has had Autism Spectrum Disorder all his life! He is now 50! His condition is a mental handicap. There are so many ways I have to help and assist him because he doesn`t understand the way the world works, can`t understand financial things, can`t take in information! Has a poor memory! Doesn`t understand meaning of words therefore will use the wrong word in a sentence and I have to explain that the particular word he`s using doesn`t mean what he`s trying to convey. I answer his letters as he hasn`t the mental capacity to do it. I have to make all the claims for him, explaining his problems as he can`t do it! And yet he looks normal and people can`t always see he has a handicap! It`s a nightmare!!
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    My disabilities are invisible. I look OK much of the time, even when I'm in a lot of pain, because there's no point whinging about it, is there? I used to sit in the "normal" seats on the bus when I was able to travel (which wasn't that often), partly because I liked to feel normal when I could, and partly because there might be people feeling worse than me who needed those seats.

    When I was having a bad back spasm but couldn't afford a taxi, I used to sit in the disabled seats on the bus. Every step is agony when I'm in spasm, and my mobility is very limited, so those seats are a godsend! However, three times in 2016-2017 I had really bad experiences while sitting in those seats. Two separate times an elderly person (one man, one woman) stood right in front of me and loudly started lecturing me about being young, healthy, and clearly lazy and entitled, because I was sitting in the seats reserved for elderly people (if I'd been more bolshy I probably would have loudly pointed out that they're for disabled people and Mums with prams/young kids as well). "How dare you", and "the youth of today", etc. (kinda funny I suppose, given that I was 42 at the time). Both times I noticed several other passengers in my field of view nodding slightly, or looking at each other and smirking, as if they were pleased to see me getting my deserved come-uppance. It was humiliating, embarrassing, guilt-inducing... And of course, I was in severe pain and on a truckload of opioids, and my mental health problems were being triggered, so I froze up and started thinking that everyone on the bus hated me. It was horrendous.

    The third time was on a London bus. I was going from King's X to my partner's house, and I was in a lot of pain. A woman got on and stood next to me. After a few minutes she said something like, "I have a disability. Can I have your seat?" Perfectly polite. I explained that usually I'd be happy to, but that I was also disabled and I was in a lot of pain, so I really couldn't at the moment. She said, "Oh, no problem", and asked the next person along, but the guy sitting next to me started making disgusted "tchtch" sounds, and giving me sideways glances. (He was sitting in the disabled seats too, so I'm not sure what gave him the right to judge!) After a few minutes he turned around and said to the disabled woman, "Some people will use any excuse!" I don't know what she said, as I was starting to panic. I got off the bus at the next stop, sat on the pavement, and called my partner in a panic. They came and got me in a taxi.  

    Funnily enough, when I have a serious back spasm I go extremely pale, get really sweaty, tremble, and my lower back, buttock, hip and thigh contract and become stiff, so I sit in odd positions. I have to take a lot of opioids, so I assume I look fairly spacey and glassy-eyed. I clearly don't look healthy. People who know me can take one look at me and tell approximately how much pain I'm in. Several of them told me (after these events) that it's quite clear that there's something wrong with me. However, these people were so certain they were right that they felt just fine castigating another human being for (it felt like ages, but was probably only) minutes at a time. (My partner pointed out that people might think I was a drug addict going through withdrawal. Great.)

    Anyway. I've now developed such severe anxiety about taking public transport that I barely ever do it these days unless someone is with me. I lost my PIP for 11 months (just got it back) which meant that I couldn't afford taxis very often, so I almost completely stopped attending appointments, going to therapy, etc... My agoraphobia got much worse, too.

    Those people obviously either didn't realise or didn't care that some disabilities are invisible, and probably have no idea that they traumatised me severely. :(
  • SociableSeanTB
    SociableSeanTB Community member Posts: 12 Connected
    @Waylay public transport has also led to quite a few 'interesting' experiences for me. On more than one occasion, people have questioned why I have a disabled bus pass, including asking the driver to confiscate it from me and phone the police to report my 'benifit cheating'  I'm sure they would soon realise why I had one if I started having a seizure on the bus, or if I tried to drive  :p

    Even when I got on the bus, on crutches and at a hospital bus stop, the driver once pulled away whilst I was hobbling along sending me flying across the bus and crashing into people who were seated in the front row by the second set of doors. Luckily, a number of people ran up the aisle and berated the driver until he stopped the bus and I could be helped up! For every nasty comment or idiot, there are people who will stick up for me. 


  • JulesA65
    JulesA65 Community member Posts: 33 Courageous
    Ignore them. I have depression, how can you see that? I get worked up and my voice rises when frustrated or anxious.  It how can you explain to strangers about how you are feeling when your head is a mess and confused. Ignorance is a big problem especially for people with mental health issues or disabilities that are not visible such as my osteoarthritis in my knees. Don't let them get to you. You are probably worth 20 of them
  • cracker
    cracker Community member Posts: 324 Pioneering
    I have had that many times. Even my counselor has gold me I have good colour n my face. I am flushed be cause of the narcotics. Even when I double over from a spasm, the disregard that. They think that because I can walk, there is nothing wrong. They do not see the pain, the fact that I cannot use my left arm.

    I just let it go. (Italics appeared out of nowhere).
  • nannybel
    nannybel Community member Posts: 2 Listener
    I totally empathise,my copd + osteo arthritis has me sat on a mobility scooter outside my house wiv me portable oxygen machine over me shoulder.i get on public transport 2 go in2 town only wen essential as i get condescendin looks ,like,im 54 + on th outside i hav my own weird style + i like bright colours + fashion,i feel people r lookin down at me 4 holdin them up while th driver puts ramp down 4 me + i drive in + park in pushchair bay(often mums hav 2 collapse their buggys 2 make room 4 me)i put a sticker on front of me scooter reads"im speedin coz i need a poo !) Breaks th ice ! 
    Thanx 4 my rant guys x take care x???❤?♿??⭐?
  • bevt2017
    bevt2017 Community member Posts: 324 Pioneering
    Hi @SethLaa

    Good for you ?

    Hi @Waylay

    Thats shocking!
    What is wrong with these people? Don't they have any common dencency.
    This is why I will never get on a bus.
    I know how you must have felt and I'm sorry you had to go through that.

    Your right! people need educating more about disabilitys.

    Scope has a program, were they go to high schools to educate children on disabilitys. 
    I told my daughter's school about this, and they have arranged for that to happen.

    Maybe our children can educate their parents, so we don't have to deal with people's ignorance?

    Take care
    Bev x
  • bevt2017
    bevt2017 Community member Posts: 324 Pioneering
    Hi @JulesA65
    Good advice
    Thank you ?

    Hi @cracker
    Thank you ?

    Hi @nannybel
    "I need a poo" love it.
    Maybe I will buy some stickers for my wheelchair? 

    Thanks guys
    Bev x
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
  • susan48
    susan48 Community member Posts: 2,221 Disability Gamechanger
    I saw a great car sticker it said

    Not every disability is visible, please don’t judge.




  • Gwendoline1
    Gwendoline1 Community member Posts: 215 Pioneering
    Hiya everyone, I’ve only just seen this posting so sorry for coming in late. I’ve only needed to use my wheelchair in the last few years. I will never forget my first time in it. I was on a day out with my dear husband, my gorgeous son and his beautiful girlfriend, my husband was pushing my chair when nearly all the people passing by either old or young stared at me as if I had 2 head. My husband was so shocked and upset he wanted to take me home as it was his way of protecting me. I said no and my son changed over pushing me  because he wanted to lighten the mood and all of a sudden started running with the wheelchair with me in fits of laughter and his words were “ there we are, that will give them something else to stare at” it did lighten the mood greatly. 
    I find people either talk over you or look the other way. It doesn’t upset me very much now i just dismiss the situation most of the time. 
    I know it’s easy for me to say this, I’ve got a brilliant need of family around me, life’s to short to waste precious time on other people unless is something positive. Thanks for reading my little story ???
  • Gwendoline1
    Gwendoline1 Community member Posts: 215 Pioneering
    Hiya KarmaMar, How disgusting of the police. I so dislike people who want to make people’s life a misery. What is wrong with these people? I like to plod on with my life, it’s changed dramatically for me over the last number of years, but to subject people to misery is awful. I hope everything changes for the better for you. God bless you ???
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    This is a great post. Thankyou 
  • bevt2017
    bevt2017 Community member Posts: 324 Pioneering
    Hi @Gwendoline1

    I love Your story, about your son grabing your wheelchair and running with you in it.

    Made me smile ??

    I wear a hat, so people can't see me lol, It really helps my anxiety to.
    Bev ??
  • Gwendoline1
    Gwendoline1 Community member Posts: 215 Pioneering
    Hiya bevt2017, Hahaha, my heart was in my mouth haha! 
    Im glad you’ve found something ( your hat ) that helps you. I have good days when I hold my head up high and think ‘ look if you want to, I don’t care’. Other days I feel so uncomfortable that I don’t want to go out. 
    To many days I can’t accept the changes in me, I don’t tell my husband and my children because I want to be strong for them. I used to work full time as a night manager in retail ( amongst other jobs) speed home so my husband could go to work, take the children to school,clean,get the food ready and fit sleep time in. Life was busy, I was in control of me, it’s all gone now. The big BUT is, the most important things are left, my darling husband and my beautiful children and their brilliant husband and girlfriend.
    I can moan and groan with the best at times, but I’m so lucky. So we’ve got to keep smiling and enjoy life as best we can. 
    I appreciate the most simplest things in life, only this morning I could see a spiderweb glistening in the sunshine with frost on it, glorious.
    Hope you are well and looking after yourself. Any updates on appointments?
    Wrap up warm! ???
  • cracker
    cracker Community member Posts: 324 Pioneering
    bevt2017 said:
    Hi everyone! 

    I had an interesting disscution with my son a few weeks ago. And I wanted to see if other disabled people, have had similar experiences.

    For those who don't know me.
    I've only been disabled for just over 2 years now.
    I'm proufoundly deaf and also have pheripharal neuropathy, spasms, ataxia, virtigo, non specific vascilitus, anxiety, stress and depression.
     
    I also need to use a wheelchair when i go out.

    I was out on my weekly day out, with my husband and my son, when i noticed 3 women talking.
    One of the women looked straight at me, roll her eyes and shuck her head.
    She then said something to the other women, then they also turned, looked at me and did the same.
    I did look around to see if they was maybe looking at something else (but they wasn't).

    I was quite upset and angry about this, and asked my husband if he had seen them doing it? "He said no"

    My son then said "it's proberbly because you don't look disabled"?
    I said "well what does a disabled person look like"? 
    He said I don't think that, but I bet they do.
    I said so it's more acceptable, if people can see your disability?

    Then I started thinking is it them or is it me with the problem?.
    Do disabled people judge other disabled people on there appearance?

    I really hate the word "invisible disabilitys" because it's like I'm saying my disabilitys are not real. 

    Maybe I should of gone up to the women and asked if there was something wrong? 

    What would you have done in my situation?

    Thanks for any replys 
    I have had this happen many times. How demeaning for all of us.
  • cracker
    cracker Community member Posts: 324 Pioneering
    This has happened so often to me. (Sorry, I somehow put my response into the text). I echo "What does a disabled person look like?"

    There is stigma against the mentally and physically challenged. I am glad we have this forum where can be who we are.
  • bevt2017
    bevt2017 Community member Posts: 324 Pioneering
    Hi @Gwendoline1

    I'm ok, how are you.

    You have a lovely family, who are very supportive of you ?

    I'm the same i have my good and bad days like you.
    My husband takes me out twice a week, just for a coffee and to get me out of my prison cell lol.

    Also like you, I haven't been disabled for long.
    But im grateful for people like you and the community, who have helped me through some really difficult times.

    Yes! I have an appointment with my nuerologist.
    I write to him all the time lol.
    I sent him a thank you letter about finding the vasculities doctor for me and told him what she's doing for me.

    I also told him about my eyesight and the operation, so I think that's why he wants to see me?

    I see the ENT doctor next Friday and my vasculities doctor said she would see me there. ?
    She's lovely and I feel more positive about finding a diagnosis.

    Yes you keep warm too.
    My friend made me a blanket for my wheelchair.
    Keeps me cosy ?

    Hope you have a lovely weekend.
    Bev ??
  • bevt2017
    bevt2017 Community member Posts: 324 Pioneering
    Hi @cracker

    Hope you are well.

    I just think its people's ignorance.

    In my day, we was tought to respect the disabled and the elderly, you just don't see that anymore.

    Me to! I get a lot of support from the community and scopes team.

    Bev ?

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