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.

The worse person I have met was probably the nurse doing her shopping (she told me she was a nurse, no uniform)

She stopped me to tell me I was brave to leave the house like that ! (I was clean, with clean clothes on.)
How good I was with my shopping trolley. Whilst tilting her head and her tone was very pitying. (Yes, I can push a trolley)
Was 'it' temporary (The chair I assume) and what was wrong with me? (I am not going there in the middle of my food shopping!)

I was shocked at her attitude and rude questions. I just said I was in a hurry. But cringed every time I ran into her on the various aisles. As I was unfamiliar with the store layout and had to backtrack at times to get specific items.

It's a strange thing having to accept you're disabled

I had similar difficulties

I'm not as affected as you are by your health issues as yet op but I have had to accept in recent times that I am disabled.

It took a while and I stubbornly (and stupidly!) held off getting certain aids for too long really, now I have them I'm annoyed at myself for having waited as long as I did!

It is an adjustment, but once you make it then it becomes easier to get and accept the support you need

It's not a derogatory label at all, it simply is another descriptor of what makes you who you are

Eg I am a middle aged scottish single mum who has severe mental illness and also a physical disability

Or

I am a disabled single mum

Neither is offensive or inaccurate

My dd also struggles with accepting and seeing herself as a disabled person, that's caused some tension recently as she is refusing to access certain support she is eligible for and is making her life harder than it need be for no other reason than her own refusal to acknowledge her reality

She was dx with a genetic disability the summer before she started high school, it was good to finally get a dx but the timing was shit! Just as she was entering that self conscious time and having to meet new people etc she was also having to have time off for appointments inc fittings for orthotics and her new school didn't know her and thought certain things were her "slacking off" which absolutely wasn't the case, it ended up with me having to make an appointment with the head and take in photos and letters from specialists etc to get it through heads thick skull that dd wasn't lazy she was disabled! And the actions the school were taking were making her even more fatigued, in pain and even risking her future mobility (there's a progressive element that if specialists advice wasn't followed could mean she would become a wheelchair user earlier than absolutely necessary) I was furious!

I'm annoyed at dd on this as she is putting her health and mobility at risk out of basically embarrassment

So I'm trying to gradually get her to do what she needs to do

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.

So true! Even without disability being a factor! I've had many an amusing conversation with dd where she's been shocked at some of the stuff I've done/been through as to her I'm "mum" sensible, practical, planner, "grown up" she kinda forgets I too was once a child/teen/unconfident new employee...

That nurse you encountered? Good grief! Not only rude/offensive but several points go against how nurses are expected to behave based on professional standards!

Worrysaboutalot can I say thank you very much for your threads?

You post so thoughtfully and articulately, you make me revisit a lot of stuff, or even tackle it for the first time. And your threads elicit similarly thoughtful responses, many of which I'm also finding useful.

I am currently having massive, massive fails re unhelpful "helpers" who on this occasion have caused me quite serious harm... and are now compounding the harm by demanding I divert my non-existent energy from trying to sort out their mess, into managing their Bad Feelz for them.

So OP and Straysocks, your oh-so-accurate description of the problem is at least helping me feel it's Not Just Me.

I can only continue to be alive if things fall within quite a narrow scope, and these problems are dangling me outside it. All the while, these people are imagining they are lovely helpful human beings.

Sorry to hijack your thread, OP. I just needed to talk about it.

There’s a great Instagram account called @nina_tame that I would recommend. Nina talks about her disability, and coming to terms with being disabled when, as you say, it’s a club she didn’t feel she was part of. She has a lot to say about internalised ableism and the label ‘disabled’. It might help you to read some of what she says.

I was moaning about this earlier. Some people think they know best and anyone with any kind of disabilities is aching for their advice and comments. Unfortunately you are fair game for the world at large. You do need a tough skin and be able stand up for yourself. I had some random guy waving and gesturing for me to cross a busy side road when it wasn’t safe. No I don’t weave around traffic unless I catch drivers eye first. I just wait for drop curbs to become clear.

It’s easier if you go through situations in your head first and what you will say and do. Practise if needed. Be clear be firm. No I don’t need help, this need training and skill so nobody else can do it.

On plus sides it can be positive being part of the Deaf and Disability community it’s not something I’m embarrassed about. I’m proud, just wish society at large treated me like normal adult.

@PerkingFaintly

Worrysaboutalot can I say thank you very much for your threads?

You post so thoughtfully and articulately, you make me revisit a lot of stuff, or even tackle it for the first time. And your threads elicit similarly thoughtful responses, many of which I'm also finding useful.

Bless you

I do think, I have been lucky that many knowledgeable kind people respond to my post(s). You included, I recognise your name

I am trying to sort out my life, taking into account my health difficulties. I will get there but I need to rethink everything at so many levels.

My current challenges are trying to get a job, practise driving my adaptive car, sort out my mental health and my attitude to labels etc.

I feel a mess most of a time, so it is good to hear that I come across better online

When I acquired a disability in middle age I did some counselling through Spokzpeople to help me come to terms with my new body image, needing help with stuff, and yes the thing about being disabled which was really hard. Partly as that meant admitting that it was permanent, and partly as it wasn't me if that makes sense.

@PerkingFaintly Please offload here. A problem shared etc. Sometimes we all need a space to be listened to. Certainly this is why I use mumsnet so much recently.

JollyRanchess Thank you for the suggestion, I will look Nina up*

Graphista Your daughter is lucky to have you supporting her. I can't imagine the extra layers needed to unpick in a young person who both needs extra support but is fighting it the way all teenagers reject adults to learn their independence.

CMOTDibbler I how much do they charge for counselling sessions? Just to give me a rough idea of cost? I like the idea of offloading on someone who isn't by DH or my BF's who will surely get sick of me at some point.

@Akire Very strong words "I’m proud, just wish society at large treated me like normal adult."

I need to learn to be proud of myself. To not mentally or physically feel I am taking up too much space, that I am causing trouble by asking for adjustments that enable me to function in this new world I am negotiating. I need to build up the confidence that you have, one day I will be there.

I can't remember how much it cost unfortunatly, but I remember it was very reasonable. It was all online by secure email as well which suited me as it gave me a chance to really think about the questions and what I was saying

Find and follow some Disabled people on social media so you not “just” hearing and feeling that Disabled people are a nuisance and drain on society etc. If sport or arts, music or journalism rocks your boat you find positive role models. Role models not just for teenagers we all need see people like us being represented and having their voices heard.

It took me awhile to get a handle on having a self image which included 'disabled' too. But - it's true isn't it? Once you are over your initial upset, try and think about why you are having such a negative reaction. I had to confront some pretty deep rooted ableism that I didn't know I had. It wasn't comfortable working through that, but I am glad I did.

I'm annoyed at dd on this as she is putting her health and mobility at risk out of basically embarrassment

Yes, I'm struggling with my DD with this one as well. For example, she shouldn't really stand for any length of time. Her normal teachers know this, but last week they did a whole year group activity with someone different. DD had to stand for over an hour becoming more and more in pain until she was in agony and struggled to walk afterwards. I asked her why on earth she didn't point out she needed to sit down as I can't believe they wouldn't have found her a chair straight away if they'd realised - she didn't want to draw attention to herself.

I have accepted my mobility issues.

That means you have a disability. I agree with the other posters. I don't see it as an ugly word and it definitely encompasses many many different conditions. There's is now so much talk about hidden disabilities as well.

You know you are a strong and capable woman. There is no shame is needing some adaptations to help you move about. They help you be a better mother, home maker, good at your job, wtv. That's what's important.

I do think there is a bit of a grieving process in accepting that the word disability applies to you. For all the creativity in problem-solving and positivity, it is a huge loss - of the future you planned/expected and how you see yourself.

It has been interesting reading your experiences of people over-helping you and how that impedes your independence. My disability is 'invisible' so I have the opposite problem of people under-helping and how that impedes my independence, in terms of being able to convince anyone to provide enough help for me to achieve independence. So tricky.

Circling back to connotations of the word disabled, I have had people say to me things like "I wouldn't think of you as disabled" like it's a compliment.

I find that very strange now because the term being used to describe me doesn't upset me anymore, and people are basically saying they think it's a slur when they tell you oh so encouragingly "oh don't call yourself disabled, I don't think you are".

To me, it's a simple descriptor not a definition of who I am. (Although, yeh, society is a different matter...)

@Akire

Find and follow some Disabled people on social media so you not “just” hearing and feeling that Disabled people are a nuisance and drain on society etc. If sport or arts, music or journalism rocks your boat you find positive role models. Role models not just for teenagers we all need see people like us being represented and having their voices heard.

Definitely this. And finding other people who you can relate to - I know some people find the term a bit cringey, but a "community".

Connecting with other disabled people, whether with similar or completely different difficulties to me, really helped me to feel differently about it and see it differently. It definitely accelerated my understanding of social models clicking into place, and it also made the whole thing less frightening to see all the ways people adapted and had support made the prospect of future deterioration less distressing.

It also helps to feel less alone and less like the odd one out. Being shut out of places and activities that are poorly designed can be such an isolating experience, so having connections with others who understand can be very restorative.

I am wandering through Nina's instagram, recommended further down the thread.
www.instagram.com/stories/highlights/17850248620855737/

And watching the late great Stella Young

I have read all your thoughtful posts.

Definitely going to contact the counselling people.

Yes, I do need a new tribe to help learn and grow.

I can see how positive role models could help, as long as it was for achievable for me things, not climbing Mount Everest!

Grey12 Thank you, your words made me cry (in a good way)

Yeah I get you . To you you look at yourself as having medical conditions but to others with your aids they see a disabled person. Automatically it happens. My medical conditions class me as disabled but to me I am not disabled as there are worser disabled people then me. I will never see myself as disabled. It’s very hard as I hate the pity looks from people. Even worse when mine are hidden disability’s . I would try counselling if you can to change your headspace. Also whatever conditions you have I suggest joining social media groups if you can. I met so many friends through them.

OP I have recently become disabled, also with neurological mobility issues from chemotherapy nerve damage. I call myself disabled as very much the social definition. I believe in the social model.

@Worrysaboutalot thank you for starting this thread. I'm learning and thinking about a lot reading all the posts.

I have had a chronic illness all my life and then stage 4 cancer which I’m still suffering from after effects.
I’ve never considered myself ‘disabled’ but if someone does it doesn’t bother me.

We are a society of labels but it doesn’t define you or the person you are. It’s a very broad term - and what one person defines disabled isn’t someone else’s.

Perhaps you have negative connotations with the word but really it’s just that - a word. That’s it. Your son loves you regardless of what he has called you and most likely not to hurt you.

CharlotteRose90
I know one person with my condition. Because she is so much better than me, it is hard. As we are not in the same stage IYSWIM. I don't wish this on anyone, I am glad she is better.

YY, to seeing other people who are 'real' disabled people. People who appear to have more serious difficulties or/and life limited. Who am I!

I keep trying forums, but I get better responses on Mumsnet, the health forums seem to slant to negative thinking and I am more practically minded.

Summerdayshaze
Having just been introduced to the concept of social model of disability earlier on this thread, I agree with you.

My nerve damage is from an auto immune condition (As yet unknown), I am sorry you are going through this, it is pants. I hope you are surround with good support