Disability View

Left wing 30+ year old with muscular dystrophy, getting tired of living with older, hard right wing parents, who don't understand disability.

[disabilityview]

Sunday 4th October rant

I have a very annoying new night caregiver. Complains all the time to me in a jokingly way. Like I use Alexa all the time, she comes running into my room, “you want something?” “No, talking to Alexa” I replied. She then comes out with  “oh I wish you didn’t talk to Alexa” in a funny way, but she is actually annoyed at me. Can read people like a book. It’s all the time, she trying to manipulate me, so I feel guilty and so I won’t ask her to do much for me. Hate it, I’m already scared to ask her to do anything for me, can’t even eat or drink without a comment from her. If it continues I will have to get rid, my life is hard enough as it is. I don’t want someone to make me feel guilty in my own fucking home. Getting stressed now, fuck sake

[disabilityview]

Problems with caregivers

Some caregivers like to tell you all the time in a passive aggressive way, the caring they do for you. “he’s had me up all night” night carer says to day carer. Because they don’t like it when I stay awake until 4-5am on my computer some days, usually having drinks and snacks. “Chocolate at this time”. I feel like saying “yes I’m only 5 years younger than you, you know an adult. I used to put up with this, but now I hate it. I shouldn’t be made to feel guilty for a job they get paid to do. 

[disabilityview]

Being infantilized at 35

The last few posts have had me thinking about all the bullshit I have to put up with. Even before writing this... I’m on my bed and I asked the carer to turn me onto my side for 10min, but because it’s 11pm, I get asked if I‘ve finished on my pc. I said no, then I got turned onto my side. 10min later, I got turned back. “can I go back on my pc”, I said, carer then said “yes”. Followed up by an unnecessary comment, that makes me feel guilty. Happens all the time with some carers. Sometimes I will go on my pc all night, then next day I always feel guilty. It’s like you are disabled therefore we must treat you like a child... it’s bedtime. 

It’s also my fault because I have no confidence to tell them to treat me like an adult, You know with being 35 and all. I have now realised this is causing some of my anxiety. 

Wonder if they think I’m asexual... Dad did until he illegally found out I used a cam girl site, hahahaha! Jesus Christ that was embarrassing. Story for another time. 

[disabilityview]

Me: Can I go on my PC? Carer: “Oh should have guessed, you addicted to it, hahaha”  NO! I actually need it to have some sort of life.

Can’t even have a piss now without a comment. After I’ve pissed. carer: “oh I didn’t think you was going to stop, hahaha” or “you haven’t done a lot”. 

Please can I do everyday normal things without comments! Sleeping, drinking, eating (yes I have lots of chocolate, don’t need reminding everytime I have chocolate), pissing, shitting, getting washed, getting shaved, it’s all the time. Feel so fucking disabled, Why can’t people just shut up.  

[disabilityview]

Disability pet hates

People asking me tedious questions after I ask them to do something for me. eg

 “Can you pull blanket down?” other person, “why are you too warm?” “YES! 20 minutes later, “can you pull blanket back up” other person “are you cold now” “YES!”.  Questions questions questions,  EVERY time I ask for something. please can I have a a simple job doing without questioning me, gets so tedious and I feel so disabled.  “can I have a drink?” other person  “why? are you thirsty?”. Jesus Christ!   

[disabilityview]

Problems I have with disability and my older parents #5

For the last few months dad has started calling me “baby”, which is really inappropriate, a father calling their 30+ year son “baby”.  I’ve told him that is what men say to their girlfriends or vice versa. It’s really humiliating, he knows I can do nothing about it. 

[disabilityview]

My dad’s Racist rants

Every time I have a normal discussion with dad, about anything really, he always ends up going on a racist rant, every time now. He is getting worse, as he’s getting older. 

[disabilityview]

I’m very ungrateful, dad tells me

Ordered some of these for care givers and family, to say thank you for helping me during lockdown. Dad would never do this, would probably think it’s a waste of of money. I’ve been called ungrateful so many times in last few week. Yet, I’m one of the most grateful, being disabled with Duchenne makes you grateful, And if I move out, I’ll be even more grateful for people’s help.  

[disabilityview]

Problems I have with disability and my older parents #4

How come it's okay for everyone in my family to know my financials? Than I ask family members about their financials, and you get "don't be rude" or "it's non of your business". Sick of it.

[disabilityview]

Worst day ever

Hearing bad news that affects you is the worst feeling. Today was the worst bad news I’ve ever had, at 34 it never gets easier.  

[disabilityview]

Problems I have with disability and my older parents #3

Making me think because I‘m severely disabled, my opinions mean nothing, because I don’t live in the real world. Like:  

Me: “Dad, I don’t want to listen to your racist rants” 

Dad: “let me drive you around, so you can see the real world” 

Me: “so you want me to be a racist?

Dad: “I’m not racist, I’m speaking facts, we have too many foreigners here!”

Me: “But your grandson mother is foreign”

Dad: “No not them, they’re okay”

Me: “You sound like a nazi”  

Dad: “well, he got some things right”

Me: “What like? Killing thousands of disabled people and millions of Jews”

Dad: “he didn’t kill any disabled people. Stop playing the disability card!”  

[disabilityview]

Problems I have with disability and my older parents #2

I know my condition better than anyone who doesn’t have it, yet parents think they know Duchenne better than me.

[disabilityview]

Duchenne problems

It's time we hear "men with Duchenne" or "adults with Duchenne. It's always "boys with Duchenne". We do exist you know.

[disabilityview]

Problems I have with disability and my older parents #1

Don't know why but my dad hates when I talk to older people with Duchenne. Don't get it, why wouldn't he want me to get advice from people with my condition. Well he hates that I sometimes wear my bipap during the day. I feel so guilty for wearing something that helps keep me alive.  

[wonder-cripple-deactivated20250]

Being ignored seems to be the most prevalent recurring theme in disabled lives.

We are ignored by peers growing up.

We are ignored as adults by the abled majority when we fight for visibility and accessibility.

We are ignored by the government when we voice our need for more reliable and substantial services.

We are ignored by healthcare professionals when we are sick during a global pandemic and doctors decide that having a disability on top of being ill means we have no quality of life. And the consequence in this case is that we are left to die.

And this is why, when we as disabled people achieve anything of note, we are reduced to that one moment. That one, "inspirational", tearjerking moment, that makes abled people feel good about themselves.

That becomes all we're good for, because we are not noticed enough, not valued enough, for anything else about us to register.

This cycle needs to end.

[disabilityview]

Really feeling this recently, it’s so frustrating how we get treated. Feel so worthless sometimes, also affects my mental health.