Sad because my DS called me disabled

[Worrysaboutalot]

I didn't know where to put this thread, so I am trying it in the general health section.

I was born deaf in one ear and hard of hearing in the other, this is normal for me. Though my hearing is the one issue, most people feel is a hardship for me, I disagree.

Yes, I have been chronic ill over the years with bowel problems and thyroid issues but I kept house and raising our kids. I just got on with things.

During first lockdown I developed a neurological condition, which left me with damage arm and leg nerves. Therefore I drop things and frequently fall over, I now really struggle with my mobility. In side the house I manage with crutches or walking sticks and wall surfing etc. Outside I use a powerchair. I now am on PIP, have a hand adapted car on a mobility lease.

But I just feel normal, a bit broken in parts but still the same person I have always been.

So why was I so upset (not in front of him), when my teenaged son, made a random comment about how I was disabled. When I showed him the sign which is going on the garden wall, trying to reserve the road space I need too offload my wheelchair.

A nice poster on here mentioned that because I get PIP help for my difficulties, that makes me officially disabled. Guess I see the logic, but I don't feel that way.

At a recent zoom meeting, a women called my name saying they needed a disabled view on the item under discussion. I agreed we just get one. It wasn't until later, that I realised, she was expecting me to speak on the behalf of disabled people.

But why, I am just me, I know no more than I did last year!

I am really struggling with this concept. I don't even understand why.

I am practicing driving my hand adapted car, so go to a supermarket up to 4 times a week atm. I am am getting so many people dashing over to help, when I am hoisting my chair in and out the car.

Rushing to help, when I use my grab stick to get light things off high shelves.

They are all so kind but it is making me feel like a incompetent child. I don't like thanking people, when it makes me feel so bad inside to be pitied. I try to remain positive and friendly despite my feelings.

My chair is just the same as my crutches, just an aid. A way for me to freely move around the world. Why do people see the chair as a bad thing?

Disability is something other people are.

I am just me.

Do you have negative connotations with the word disabled? The health issues and the list of adaptions and aids you have to help you with your daily life definitely suggest you are disabled. I think your sons comment was entirely fair.

A disability does not stop you being you. The people you describe are being helpful, not pitying you. Do you pity disabled people?

I understand your feelings but I've found that accepting that my mental health issues were part of me was a positive thing for me. I'm not a lesser person for this and its not everything about me but its definitely me.

I guess I feel like everyone thinks I have joined this new club.

But I have not received an invite and feel unqualified to even ask what is happening... I guess.

I think it’s just something about acceptance really-I use crutches on and off depending on how bad my knees are or if I need to walk far- when I have the crutches people offer to help- when I don’t then I’m invisible- I prefer to be invisible! My gp once said that I have to accept my new normal- even though I still felt the same as always-on the outside I know I look different and I suppose ‘disabled’ .I know how you feel-

It sounds like you are disabled. I don't think your DS was trying to be unkind or derogatory at all.

'Disabled' is very broad. Each person's situation is unique to them. I'm sure many feel like imposters because of some idea in their mind about what it is to be disabled.

I have a what I usually refer to as "a long term health condition" as whether or not I need medication and whether or not it has a significant impact on my daily life varies over time. For about 6 years it was severe enough to significantly impact my daily life to the point I met the criteria for "disabled".

It took me a long time to accept being disabled, for ages I felt like it was a sign I wasn't managing well enough. I found thinking "I have a disability" easier. I met a really inspiring lady who pushed me to accept it and to use it to advocate.

I have that ability because I see how invisible illness gets treated, what standard standards cause me unnecessary problems. The same as you will be able to see when there are little things we might not notice - a narrow door frame, a door you can't open fully, one so heavy it's hard to open without adequate leverage. Or places that don't offer a hearing loop, or whatever the aids you use are. All those things are normal in your life but harder for others to see. And trying to centre or at least hear those perspectives is how we make society more inclusive.

Why would you think the people pitied you?

Honestly, I think you need to address your own prejudice towards what you see as disabled people. Once you've done that, you'll feel much easier with the term.

I have accepted my mobility issues.

I have been having increased problems falling and dropping things over the last few years.

As unknown to me this neurological condition was progressing. So it was a relief in some ways to know, why.

Yes, it is how others treat me, I am struggling with. They see me differently, than I see me!

I use the social model of disability in my work. You are not disabled by your condition (it is not a deficit in any way) but you are disabled by society, our communities are often not set up for differently abled people and they come across various barriers in everyday life.

disabilityinpublichealth.org/1-1/

Yes, I do feel like an imposter.

Yes, I do notice when loops aren't working and I couldn't get into the accessible toilet at Morrisons as they had two extra bins for nappies behind the door. I could only use the toilet by parking my chair across the toilet and have my friend hold the door shut for me as I couldn't reach the lock. Sigh, I need to email the store manager about that.

I am wondering if I have a negative feelings towards the word disability. I will have to think more about this idea. I guess I associate life long struggling.

Have a look at the 'social model of disability' and you may feel more comfortable with the word. The disability has not changed who you are and it does not define who you are, but society doesn't always make things accessible which means that you are 'disabled by society'.
It sounds like you are comfortable with your abilities which is great. Keep continuing to advocate for yourself if you need help, and to tell people when you don't.

I was always taught that if you are disabled that is not a disability to you as you don't know any different. You have been brought up this way and to you it's just normal life.

I believe I’ve read in literature relevant to my work that the way you phrase it does have a big impact:
Saying a person who has a disability rather saying having being a disabled person for example. Put the person first.

I wonder if part of this is that the wheelchair makes your disability instantly visable to all whereas your other health issues have been invisible at first glance? I found when pregnant that I felt vulnerable. People know a big thing about my life whether I wanted them to or not (& I’m still a bit rah years later about the effing comments time and time again from complete strangers and acquaintances alike about how my bump was so big am I sure there aren’t two in there!!)

The social model of disability is an interesting and comforting concept.

Like when I took both my children to have Covid PCR tests (ordered by the school) in two separate visits to the drive though test centre.

The first visit was a nightmare, the staff signed with a hand ✋ telling us to keep the window up. They had masks. I lipreading a lot. So I couldn't hear anything at all. We got though the 5 stations eventually. But it was pure guess work on my behalf.

On the second visit I preprinted signs on A4 paper to hold up on the window. First sign explain why I couldn't hear at all. Second sign explain why I was here, aka who was to be tested. Third sign was the code they scanned.

Second visit we were around in minutes. No confusion or upset, just simple signs held up at each station.

So with the right signage, I have no problem but no signs (the original visit) it was societies making a problem, not me.

Yes, my chair is very visible. I think that is a big part of it. Especially for job interviews, I can't hide a chair and I am worried it will put people off employing me.

@Rizzoli123

I was always taught that if you are disabled that is not a disability to you as you don't know any different. You have been brought up this way and to you it's just normal life.

But what about people who have become disabled? Your definition makes no sense

@DuckWithOneWing Maybe that refers to her own situation.

This reminds me of a family member of mine. They've had several strokes which has affected their cognition and their mobility and years after a doctor referred to them as disabled and they were gobsmacked. In all their years of living with their impairment, it just never dawned on them that they were considered disabled. I think for a lot of people it can be a hard thing to face that you aren't as able bodied as you once were

You've been given some excellent advice here re the social model of disability, person first language etc.

If you're able to use a mouse/ keyboard okay I wonder if it's also worth you doing the Harvard Implicit Association Test on disability - as I think this might help you explore any implicit biases you might have about disabled people.

@MargotEmin

You've been given some excellent advice here re the social model of disability, person first language etc.

If you're able to use a mouse/ keyboard okay I wonder if it's also worth you doing the Harvard Implicit Association Test on disability - as I think this might help you explore any implicit biases you might have about disabled people.

I completed the test as suggested and my results show... "Your responses suggested a slight automatic preference for Disabled Persons over Abled Persons." ...which is interesting.

I didn't think I had a bias against people with disabilities, however that was nice to have that confirmed. I try to be kind and positive to everyone I meet. I treat people, as I would like to be treated. Life is too short to make more problems!

I just struggle with the term as a personal label.

DD is going through something similar so a lot of your post resonates with her. She also doesn't see herself as "disabled" - just a person who has some limitations which she can work round with some effort. For, her it's a pyschological jump that she hasn't quite made - she accepts that she now has limitations but not that she now has to be "disabled" although she fits the legal definition of that. A bit like if she dyed her hair red she'd still be the same person, not have to be some new category of red haired people.

The hardest thing at school she's found at school is that she's gone from being pretty much invisible (large secondary school) to being called "Crutch girl" by just about everyone. She doesn't mind it from people she knows, but doesn't understand why the whole school suddenly feels they have to take notice of her, just because she uses mobility aids. Again, she hasn't changed - it's the way people perceive her that has.

I have to admit I didn't think I was biased against disabled people - and I still don't think I am - but her experiences have opened my eyes. There's a fine line between acknowledging disabilities (to make necessary allowances) and feeling they have to be highlighted.

(hoping my post doesn't offend anyone - absolutely didn't mean it to, still trying to process my own feelings).

I totally get what you mean. I'm a lip-reader and have to counsel well-meaning folk on not trying to use Mr Tumble's Makaton to me, not shouting at me and that yes, actually, I have tried hearing aids many times to sadly no benefit. The thing you said about work wanting a disabled persons view on something without realizing they meant you made me laugh and truly resonated with me. I once thought my boss was asking me about vaccines for his new born because of my qualifications and his respect for my judgment on a personal matter. No, basically how bad was it being deaf 'coz he wasn't keen on the MMR. Many other instances when I didn't realise I was a spokesperson for a portion of society I had never known.

The fact that most people are kind hearted and intent on helping someone is true. However, it's often an unequal dynamic where that person is serving what they perceive to be your need, in fact identifying (often wrongly) you have a need and what that need is on your behalf and delivering something to you that you have not asked for and do not want either at all or from them. Most people who are on the receiving end of this help have likely developed intelligent and efficient strategies that suit them when tackling the obstacles that they are frequently presented with - for example my old trick of handing a £10 note for a bag of crisps so I didn't have to navigate mis-hearing the cost of them and then also mis-hearing the awkward conversation about giving an incorrect amount. I could just get my crisps with change and scoff them like anyone else and save us all the bother.

I'm sure this sounds pernickity to those who are usually helping rather than helped. Truly, one can be of help someone, even a stranger in a shop, in a polite, equal and respectful manner, as surely every person expects from social interaction. To take it to an extreme purely for illustrative purposes, imagine you're browsing in a clothes shop, lots of people happily browsing anonymously but people keep telling you to try on clothing that is absolutely not to your taste. Men handing you fluffy baby-pink slippers, skinnier women handing you outsize clothing, bigger women handing you too small clothing ... yes, a silly example just to depict how one would not feel equal or seen or important or understood. They would be identifying what you need according to the differences they see between you and them, not having asked if you'd care for any assistance and if so with what. It would be strange experience and having it multiple times per day would be draining at least.

OP, about your son and his labeling it is a shock to the system and it also has happened to me. I've decided to file that one under the fact he sees me from his own narrow angle, Kids don't see their parents (esp mums?) in a rounded way and would have their tiny minds blown to think that under the middle-aged, harassed exterior lies someone who's had many an illegal high/one-night stand/got through qualifications on a wing and a prayer/been homeless/traveled the world/found God or Satan/extricated themselves from dangerous situations and so on (they really don't all apply to me!) and that they will learn to see me as an equal as they mature.

I didn't expect to say so much, just solidarity and this definitely isn't your issue to fix but issues others are presenting you with. Solidarity!

@UserAtRandom
^"Again, she hasn't changed - it's the way people perceive her that has."*

Yes, I really agree with this. I might need stick/crutches/chair but I am still me!

@Straysocks

YY, to the work situation. Though mine was a social thing. I am looking for work after being a SAHM for 15 years!

YY, to the shopping help too. I have bought several things as a helper has got down the wrong thing or the wrong amount and I don't want to be a pain and say that, so I thank them and put the items in my trolley. So I came home with three oven gloves on one visit! and three chocolate bars on another, which is less of a problem. Hmmm NOMO Chocolate

But I am trying to get my independence and too much help doesn't help, even though I understand each and every person is being thoughtful and I am so touched by each and every persons kindness. It really gives me faith in people.

However I need to do things for myself and learn my ways to do things, preferably without asking for help.

The best person I have met in the shops. Asked me IF I needed any help. When I was trying to access vegan ice-creams in the freezer cupboards above a chest freezer. I said thank you for the offer but I wanted to learn to do it myself. Then I added, if she saw me still here in 5 minutes then I definitely needed her help then! and laughed.

When I had finished knocking my item down, putting it in my trolley and turned around. The lady was watching to see if I could do it. I was not surprised to see she was accompanying another lady who clearly had a learning difficulty.

She clearly understood the balance between offering helping and pushing help upon someone. Something I didn't realise myself. I think I have probably pushed help on others in the past. I will be more careful in the way I offer help to others in the future.