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.

[quote Straysocks]@Worrysaboutalot thank you for starting this thread. I'm learning and thinking about a lot reading all the posts.[/quote]
Thank you.

Everyone is so supportive and giving great advice.

NowWhatUsernameShallIHave

I think I am being over sensitive about labels but I am unsure why I am being so sensitive.

My son definitely wasn't being negative and I'm absolutely sure he loves me. So it isn't to do with him saying it, more that I am concerned other people will think it.

So why do I worry about what strangers think about me?

Is it anything to do with that being your primary or over-riding identity, obscuring other longer-standing and hard-fought for parts of you?

@Straysocks

Is it anything to do with that being your primary or over-riding identity, obscuring other longer-standing and hard-fought for parts of you?

Yes, I have over 40 years of healthy mobile years and just a year on crutches/wheelchair. Maybe it is a time thing 🤔

It definitely sounds like it's the new equipment that's brought you the new identity. There should really have been some instructions with those sticks! They actually do come with a label!

For you nothing has really changed. It sounds like you've been managing the reason for the sticks/chair for some time and using them is just another chapter in that. However, people are seeing it or responding to it in the way they see fit, as a book cover rather than a chapter.

Carry on with your life, you sound great as you are. You have not changed but it looks like society sees you differently and you are dealing with that, as anyone would if they're suddenly being looked at in a completely different way. I'm sure there must be a lot of literature on this, I don't know of any but perhaps someone else on the thread can direct both of us.

That is exactly that! Aka that people now look at me in a different way.

My current friends know me as '' where as new people will know me as ' in a chair'

Why that bothers me, I don't know. In one sense it does not matter as I am now, in the chair.

A mobility aid should come with a handbook of what’s coming. You really do need much more assertive and confident. I’m 10years in and still kick myself after incidents that I should have said or done X

I think there is a current view that only each individual gets to designate what they are themselves, and what labels are attached to them. But that's just not how life or human minds work. Other people label you every time they look at you, and your son sees you as disabled. I would imagine that almost everyone else would agree with him.
The question is why you have such a problem accepting that for yourself, unless you see it as a negative thing to be.

More often and not though people treat you like you are stupid or a child. I’d be happy if people just thought things. The daily problems are when you dot get listened to or get treated badly. Or worse the head tilt and aww “are you helping your mummy” when you are in chair that nobody bothered to say before. Even if dad child wasn’t helping and you managing perfectly well. It’s the child must be carer/put upon/ what we’re parents thinking!

@Akire

A mobility aid should come with a handbook of what’s coming. You really do need much more assertive and confident. I’m 10years in and still kick myself after incidents that I should have said or done X

I hear you. However I am very confident. So much so, one of the interview panel recently asked how I was so confident, Lol 😆

So I am confident.

I don't have negative thoughts about the disability label. I even tested myself to check I had no hidden latent negativity but I didn't, which is a good thing.

So I don't have negatively

I think it is a mismatch between how I see myself and how others see me.

I need to readjust my internal feelings to align with actual facts aka reality. As that is the only healthy way to live.

I am working on this internal acceptance and I will get there, though I suspect it will be something that will take time.

I understand.

It's not just other people who are constructing this unhelpful concept though, it's you too. Disabled is something other people are? Disabled is something no one is, unless they choose that label for a purpose.

For a while, I used a wheel chair. I had a toddler. Very nice women sometimes stopped me because they thought I was absconding with her. Clearly the words disabled and mother don't go well together in some people's minds.

What I didn't like was their embarrassment and surprise when I explained that everything was fine and this was my daughter. As if they were expecting me not to be able to speak.

You may want start general chat thread on SN boards. There is a “Mumsnet with SN” even though we have pointed out the name could do with a change. It’s important link up and feel supported on here if not in real life.

@Worrysaboutalot WAIT!!!! Don't be aligning yourself to their view!!! They're wrong!!! For those alarmed at this statement and the excess use of exclamation marks I am stating she is wrong to align herself/accept the warped view of disability that is broadly held by society in all it's tiresome manifestations. Why assume a lack of confidence? OP is getting along with her life, she's not changed she's now just having to deal with that problematic view in all its implicit and explicitly biased glory because of the klaxon sounds her aids make.

I think I get where you're coming from.

I have a few different disabilities, but I don't like being classed as 'disabled' because that kind of lumps a lot of people with very different situations into one amorphous group. Hence being asked to give the 'disabled' view. That last is SO annoying as it rather a lazy short-cut. You can't make something 'disabled proof', instead they should recognise that it's merely a label for a lot of different things, each of which may need its own adjustment.

It took quite a long time for me to accept myself as having disabilities, because they came in my twenties and reconciling the new me and the old me was both difficult and actually traumatic (especially as the cause itself was traumatic). It took even longer to feel I could ask for adjustments. One thing I've found I particularly dislike is when some kind of adjustment falls through, leaving my colleagues, for example, in a position of carer. E.g. when special assistance at the airport fell through (again) and my boss ended up having to wheel me through the airport. He was absolutely lovely about it, and is very supportive of me getting the adjustments needed, it just felt far more awkward than if special assistance had been pushing me (or a motorised wheelchair) whilst I travelled alongside my group, because it changed the relationship between us.

Other people have forced their help onto me, and that was even more uncomfortable, generally because it's done condescendingly and without reference to what you actually need, just what that person has determined you need, without asking (and I think in some cases, to look better/feel better about themselves, like people who post selfies of themselves giving money to homeless people). Gah.

I refused to be referred to as 'disabled'. That, to me, implies you are (1) disabled in every aspect of your life, and (2) that's the main descriptor of you as a person, (like when you have a DC and are then refereed to as 'mum' by medics etc, only a lot lot worse), and (3) you are part of this amorphous 'disabled' blob and all alike.

Instead I am a person with some disabilities, and if the right adjustments are provided I can do whatever I want, and no longer feel the disability.

I am in a lot of pain today. My legs have asked my chest to join in, joy! Only 13 hours until next painkillers, let's hope I get to sleep most of them.

So I will make a better reply tomorrow.

@Worrysaboutalot hope the pain is more manageable now

Yes and no. Yes the pain is still here and shows no sign of going.

I haven't eaten since Thursday when the pain began, as I think it will make it worse, plus I can't feel my stomach anymore so I am never hungry.
Certainly swallowing makes it hurt more and it is hard enough to get my pills down atm, without adding food into the mix :)

Yet I am up showered, drying hair and planning to go out this evening for two hours. Because if I wait until I am pain free I will go nowhere and I am hopeing the distraction of meeting up with a friend I haven't since 2019 will help.

Plus lying in bed hurting is so boring, it is hard to focus on my book or phone when I hurt so much.

I will leave it to Monday and if I still hurt, at this level, I see if I can get a couple of days of pain meds. But surely a couple more days and it has to start getting better.

Bummer about the pain.

Hope the meet up went well, and distracted a bit. Best wishes for pain dying down soon – or the doctor coming up with some magic meds.

I think it might also be partly because of the feeling of two camps: (1) disabled (2) not disabled, so when / where is the dividing line between the two?

As someone who sounds like you live a full life and deal with your body's issues so effectively, I can imagine it could feel weird when someone says you're disabled. The thing is, you are actually extremely able, so the word disabled sounds wrong!!!

I think a lot of society totally underestimates or simply doesn't consider how being Deaf / deafness/ hard of hearing can make understanding and communicating so difficult, especially now with masks that mean mouths are not visible. It would be great if some genious bio-medical engineer could create an FFP3 that is comfy and TRANSPARENT.

To conclude my essay (!)

a) I think the word disabled is not a good word because a whole load of 'disabled' people are able people. I think a new word would be good, nothing connected to able / disable, but something that people can understand what it means and also relate to in a non-negative way.

b) come on engineers, invent a transparent & wearable FFP3 mask!!! and produce it en masse at an affordable price

The chest pain is dulling but still there but much easier to deal with. The GP thinks it might be my liver, joy!

Sign, I was uninvited from a family event recently too. It was kindly done, and I understood it was due to accessibility issues. I guess it will the first of many things I will miss out on. I can’t let me get it down, I will have to concentrate on the things and events I can attend.

Donkydinky Yes, I had a few stares out with three kids yesterday, lol

Straysocks (((hugs)))

Pollaidh Yes, with the right adjustments I am absolutely fine.

MrsKypp YY, to the dividing line. And a big yes to a transparent & wearable FFP3 mask!

I had a very busy day yesterday, so taking it easy today

@Orf1abc

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.

Sorry, but I agree with this. I'm disabled. It doesn't define me. It just is.

Yes, I agree. I am just me. Exactly the same, as I was two years ago.