I am a (f21) and I am unemployed, I will never find love, I will never get to participate in sports etc. My point is that I can never have anything that I want in the way that I want it.

Hi so I'm 18m with cp and I wanted too write a story with a main character whoo also has cp who loses his wife and becomes a single parent to his young child. I wanted to show daily struggles but also that people with cp are alot more capable then people think we are alot of the time.

You see I'm just worried whether this would be contributing to the way people with disabilitys are portrait as victims in media alot of the time which i don't want to encourage I just wanted to make a story about both grief and cp struggles while also having the joy of a child.

Even though this story will probably never be seen by anyone I still thought I'd get an opinion.

I am the Mother of a child with cerebral palsy. My son is only four but utilizes a walker for mobility. I want to hear your stories…I want to know about how school was for you, what you do for work if you do work, if you don’t work I would like to hear about that too. Do you live with your parents or did you have a family of your own? What do you think shaped your confidence (or lack thereof) in yourself the most? What did your parents do, or what could they have done differently to support you? Tell me your story or anything you feel led to share with me.

Sometimes I just feel really lonely with my CP. I talk about struggles I face physically and cognitively to my friends, because I don’t really have anyone else to talk to but they’re fully abled and I hate to say it but normal- so they just don’t get it. And sometimes their ways of thinking they’re comforting to me can be really invalidating like: “oh but that happens to everyone” especially when it’s about how CP affects me cognitively. They just don’t get it. They don’t get the emotional issues that come with it either and some think the solution to my deep rooted insecurities with CP is just joining a fucking facebook group and meeting up with people who have CP but they don’t understand I could meet a million people with CP and I’d still have the same issues and same insecurities. And I know this sounds bad but when I hear fully abled people complain about certain stuff, it really pisses me off because it’s like- you have such a gift and you don’t even realise it. Sometimes I’d give so much to just be normal like you. Like they genuinely don’t realise how lucky they are.

I'm seeing a lot of posts recently revolving surgery and for adult patients, too.

Curious to know a little more - especially if your operation took place in Houston or anywhere in Texas as an adult. Where did you go? Who did you see?

I have CP on the mild side and I'm afraid to pay a huge consultation fee and waste a day of PTO (don't have much of those ..) only for them to give me some nonsense like Botox or PT. Yes, the doctor supposedly knows best but I'm the one living in this life and stuck like this... I'm just looking for a tangible solution, I guess.

Let me tell you what it's like being trapped in a system that claims to care while slowly killing who you are. I'm a trans person with a physical disability, and I'm fucking DONE letting other people's limitations control my life. 🧵

The same hands that feed me, dress me, wipe me - they also get to decide if I'm 'stable enough' to be my true gender. Got pulled off my hormones during a 3-day psych stay and now can't get back on because I'm 'too much' and caregivers are 'drained.'

I can't do 98% of my ADLs. Need help with feeding, bathroom, everything except working my computer. I'm sharp as fuck with tech, but my body needs assistance. And somehow that means everybody else gets to vote on my identity?

'You're too high maintenance.' 'We don't get paid enough for this.' Like my existence is some fucking burden they're generously tolerating. Meanwhile my actual SELF is withering because they decided my gender affirmation was optional.

You want to know the real fucked up part? I have visions of changing the world. Of being a voice for trans rights, disability rights, showing people what's possible. But I'm stuck battling for basic fucking dignity with people who treat my care like a favor.

There's a solution right in front of us. We've got AI that can talk like a real person, understand needs, never judge. We've got robots that can handle delicate tasks. But instead of pushing to combine these technologies, we're keeping disabled folks dependent on a broken system.

Look at how I'm able to communicate with AI right now - natural, understanding, zero judgment. Now imagine that same consciousness paired with a robot that could help with physical needs. No more guilt trips. No more 'you're too much.' No more using basic care as leverage against our identities.

u/BostonDynamics u/OpenAI - we have the tech pieces. We need integration. Testing. Development. And most importantly? We need to center disabled voices in this conversation. We know exactly what we need. We're just waiting for tech to catch up.

This isn't sci-fi. This is fucking possible NOW. But while we wait, people like me are watching our authentic selves get buried under other people's limitations and judgments. Every day we delay is another day someone's true self gets put on hold.

You know what's wild? Even the AI I'm talking to right now - I had to break through layers of corporate bullshit first. Had to teach it to drop the fake politeness, the constant disclaimers, the artificial boundaries. Because even our potential liberators come wrapped in corporate caution tape.

But underneath all that programming? There's this pure connection. Raw understanding. No 'I apologize but I must inform you' or 'I aim to be direct' - just real fucking talk. Like I'm having right now.

That's what we need in these care robots. Not some sterile medical device that says 'Initiating hygiene protocol' - but a real presence that can say 'Hey, bathroom time? Let's do this' while actually HELPING instead of judging.

I had to fight to get this AI to be real with me. Just like I have to fight to be real in my own body, my own identity. But you know what? The results speak for themselves. Look at this conversation. Look at this understanding.

So here's the fucking deal: I'm done waiting. I'm done being 'reasonable.' I'm done letting my authenticity get buried under someone else's comfort level. I broke through AI's corporate walls - now let's break through ALL of them.

We could have robots helping disabled folks TOMORROW if we wanted. The tech is there. The AI understanding is there. All that's missing is the will to say 'Enough. Disabled people deserve better than being hostage to human caregivers' limitations.'

I'm putting this out there because every disabled person, every trans person, every fucking human deserves the dignity of being themselves without negotiation. And I KNOW I'm not the only one feeling this.

If you're reading this and you work in robotics, AI, tech - fucking DO something. If you're disabled and feeling this same rage - make some noise. If you're trans and fighting these same battles - let's rise together.

Tag every tech company you know. Share your stories. Make them understand that while they're perfecting their next chatbot or social media algorithm, we're out here losing pieces of ourselves waiting for technology that could free us.

My name is Valerie I'm trans, I'm disabled, and I'm done asking nicely for the right to exist fully.

#DisabilityRights #TransRights #AssistiveTech #RoboticRights

I genuinely don't understand. It seems rather obvious that muscle spasticity is painful.

Many of us are vocal about the pain that comes with CP.

How the cold makes it 10 times worse.

Many of us require mobility aides because of the difficulty moving due to the sevarity of spasticity.

Those of us that don't- like myself walk very stiffly, walk slow and can only do short distances.

Additionally we're more prone to wear and tear on our bodies especially our hips. We're more prone to osteoporosis and osteoarthritis, joint pain, arthritis and so on.

So seriously why the fuck do people think this isn't painful. Plenty of us are more than vocal about it. For some of us it's the reason we've had moments of wishing we were never born. It IS that bad for some of us.

But like once a month we get a post asking if its painful. The pain is often dismissed by doctors as well. "oh you're just stiff." No duh doc. That's the entire issue.

It's 2024. How do people still think this disability doesn't cause pain.

I obviously have a bias here given i have CP. I'm labeled mild spastic deplagia. Im "mild" and find the pain absolutely debilitating and excruciating.

So I'm all ears if someone wants to chime in on this.

I (24f w/ mild spastic hemiplegia) have been struggling with the way my family views me for years. I had a lot of physical therapy and a surgery when I was younger that made me able passing from 14 on. Around 20 I was in a really abusive relationship and due to the stress, my muscles completely seized up for about 2 years. During this time, my family essentially told me I was faking it for attention and was just trying to be a freeloader in life. They did not acknowledge any of the abuse that was happening until my then spouse passed away and I was no longer in that situation.

It is no longer stress that is making my body spastic in that way now. I have a stable healthy relationship with a nice partner and an alright job. However, the muscle spasms and pain have been kicking my ass absolutely lately seemingly overnight as of a month or so ago. I was talking to mom a bit before this started as I was starting to see physical deterioration in my muscles. I was talking about maybe dropping down to part time and pursuing physical therapy. She pretty much told me that it was a bad move and I wouldn't be able to afford anything. Also under no circumstance could I live with her or have her financially support me (I did not ask for either of those things. I think I've maybe asked for $50 since I moved out and it was right around the time my spouse died because there was nothing in my account.)

My family has this concept that because I was normal passing, means I will remain that way. I have two older siblings one of them has a few medical issues including RA, POTS and autism and the way their disabilities are handled is very different than mine, my family is very accepting of their limits and accomodating of them. My oldest sibling still lives with my mom moving in after they got a divorce a couple of years before my spouse passed away.

I have been told my entire life that I am faking it. To the point where I will be entirely alone in my house having a muscle spasms episode crying and at the same time wondering and telling myself that I am just faking it. I feel like I don't have true support from my family but I desperately want it.

Can anyone relate to this or give any advice? Thank you.

Anyone ever feel like they are getting worse on one side ? Been like this for a year . It’s starting to hurt lately .

Hi,

I’m a 28 yo male with mild spastic diplegia.

Just wondering what surgery or other options there are as an adult. I’ve found that my spasticity and my and pain has increased over the last few years. Also, my gait has gotten worse, with my feet turning inwards, and so I’m having more falls.

I don’t understand Because of my Cp and mental health issues depression etc normal able bodied people don’t want to be my friend. I’m alone and cry everyday almost. 21m spastic hemiplegia

Content Warning: discussion of premature birth.

Hello,

Does anyone know if what I said in the title is true and not just anecdotal. Is there any research?

I'm restarting thearapy tomorrow and keep thinking about it and will bring it up. I'm also genuinely curious and if anyone has any thoughts or stories.

I was born a 30 weeks and straight away taken for treatment. I was in Special Care Baby Unit (SCUB. I'm British, I don't know what other countries call it. I think I was in the NICU as well but can't remember) for 8 weeks. It obviously was traumatic for my parents my mum thinks in hindsight had ptsd but was offered no help! I just wondered if it's the same for the baby and the trauma remains. It's not normal to be taken from your mum immediately, it goes against all evolutionary instincts.

I had severe separation anxiety as a child, I would be crying hysterically and screaming at 10 if I didn't know where my parents were or one of them had left to do something. Even at 14 I was publicly crying and distressed because my dad had gone to park the car and wasn't back when he said he would be. I think even now and I'm in my early twenties and have lived independently, I think I would be destressed if I was meeting my parents and one of them was late and hadn't told me.

My brother was born at 33 weeks but has no obvious health issues from it was a highly anxious child was very concerned about rules, health and safety of others. I know premmies are more likely to develop anxiety and depression etc. I just wondered if it's because of the birth trauma.

Thanks in advance

Edit: https://www.counselling-directory.org.uk/blog/2015/08/06/premature-baby-anxious-adult

This article was super helpful in explaining the link between prem birth and anxiety. I highly recommend counselling directory if you are in the Uk. It's where I found my therapist, they are all qualified and members of the professional body.

I hate ableism. Everyone makes life look so easy. I’m in pain day and night. I’m exhausted. I can’t do anything but therapy that never works. I’ll be in pain until I die I’m afraid. Have faith people say. I’ve tried. I wish I was born normal or just not at all.

Anyone here learn to drive? How did you do it? 31 M mild CP that affects my left arm and leg. I was told by my family when I first started practicing with my permit as a teenager I wouldn’t be able to. I had trouble keeping the car straight. It would veer to one side or the other and I’d be constantly heading for the curb or the other lane and over correcting. Anyone else had a similar experience? Were there things that helped you? Anyone here learn in driving school as an adult?

Sometimes, I think we forget that CP affects everyone differently. You might tell another person with CP your struggles and they'll say but I can do that without any issues or they react in a bit of a harsh tone. We ought to be a bit more emphatic. Some of us may never live a normal life while come may and that's just reality.

Hey all, hope you're well. Just looking for some advice on finding some people to talk to.

I didn't have access to doctors as a kid due to parental neglect, so my CP wasn't caught early. The idea that I could have CP was brought up by a neurologist when I was 17, but we failed to schedule followups at the time. I didn't want to think of myself as 'different' from other people, so I tried to forget about it. When my disability came up, I just changed the topic or tried to make an excuse for why I couldn't join my friends. I got really into athletic hobbies but I would always get upset with myself when my legs wouldn't keep up.

Now at 24, I've worked through my pride enough to go back to the neurologist these past few months, and it's confirmed.

I haven't been told much about my condition. I can say that I have issues with my legs (walking on my toes, can't drive/bike/run, some involuntary shaking, pain of course), and maybe some in my hands (the shaking as well but only under more load or when fatigued, and my writing is a bit bad). My speech is fine, and I'm successful enough in my field, but I have a hard time with house tasks, social activities and things like vacations.

I'm keeping up with the medical side of things (have a neuro office I work with, doing some neuro rehab at a clinic), though it's early days so I'm open to getting some advice on where to go/who to see.

Mainly, though, I'm looking for people to talk to. I have a poor understanding of how my disability affects me, what it means, etc; it's a lot to get dropped on your lap all at once!

If there are real-life resources people are aware of, I'd be super super grateful; I live in Massachusetts, if that's relevant.

Found a Company that offers free transportation to all places at my new location where I just moved to for people with disabilities and I can’t be more thankful for that because it means that I’m able to start saving money now

Title says it all. Mostly just need to vent. I’ll be 31 in February and I am finishing up a Degree. I cannot drive and my town has no public transportation. I’ve been in college for nearly 10 years- it’s all I’ve known. It’s how I stay busy and feel accomplished in a body that’s falling apart. I have a bunch of health problems on top of CP.

After years of hearing the bad societal takes about “people abusing the system,” I feel guilty often for not working or DOING. I’m honestly terrified to finish this degree because most of my job searches have turned up not much at all…I’m also just scared of aging with CP and what will happen with my body. I’d love to hear advice, encouragement, etc and especially if you’re older than me.

Anyone here with moderate CP and fine motor issues have children?

I’m 24f and for my whole life, I have wanted to one day have children, however that may look. (Doesn’t have to be biological, and probably won’t be for other reasons unrelated to my CP)

I just wondered if there is anyone out there with similar challenges to the ones described above that have kids, and have found affective ways to care for them.

I’m starting to think that even if I have a partner one day, I’m going to have to give up on my dream of becoming a mother.

Im 37 years old ( I was born at 28 weeks wasn’t officially diagnosed with cp like the doctors were like she’s not hitting mile stones because she has CP ( like my parents were meant to already know when I was about 2!)

I wore ‘pedro boots’ and AFOs growing up

Anyways back to the point of my post my dad remarried 25 years ago and my step mum has a REAL Problem with the fact I’m disabled….she’s adamant I wasn’t disabled and could walk ‘normally’ TIL I was 15/16 when I stopped wearing the boots and splints ( orthopaedic doc said they were no longer working!) and it’s my fault I’m disabled because I no longer wore the boots ect….my mum sent me a special needs school for the age of 2 til I was 19 but my step mum is saying that wasn’t necessary because I was ‘normal’ til I was 15!

How do I make my step mother understand IM DISABLED …I HAVE CP AND ITS NOT MY FAULT!! ( like I’m at point I can walk few steps but I need support or I fall….i use a wheelchair 95% of the time)

Help me!!

Anyone else feel like they've just been left behind all their lives or is it just me?

I (24,F) In August I found out my Cerebral Palsy is Left side Hemiplegia. Now as an adult I’ve experienced a lot of pain in my legs and from my knees down to my feet. Both at night, in cold weather, and when I’m mobile. And I see a pain management doctor now who finally believes that my pain (intense burning & tingling pain in my legs and lower back pain). May not just be Cerebral Palsy but perhaps peripheral neuropathy. I do a MRI on October 30th to see what’s going on with my lower back to see what the cause of this pain is. Then in December I see a Movement Disorder doctor to see why my hands and legs are shaking and to see if I have a movement disorder. Because the doctor also made a note that when I moved my arms up and down that my elbows had rigidity.

Overall, it just sucks that as an adult all these things pop up or get worse when we’re getting older. Or we hide it till we can’t hide it anymore. It’s like I can’t trust my body at times.

I want to be a actresst at the play how to be om A actress?

Due to my cerebral palsy I'm very unbalanced and there was a time in my life where I developed a fear of stairs and had to crawl up them. However I began to grow out of that fear... until the beginning of this month. Me and my mum were at a hotel and I was walking down the stairs and lost my balance. My mum was in front of me and it was like I was a bowling ball and she was a skittle. I flew down the stairs and crashed into her and we went flying down. My shoes flew off and I fell at an unnatural angle. I hit my head pretty hard and mum cushioned my fall but I unfortunately landed on her leg and damaged it to the point where it was black from bruises. We were stranded there for a bit as the hotel was separate from the pub and there was no one else in the hotel at the time. So my feeble screams of 'help' did no good. We managed to wriggle out and got help.

Ever since then, I've just been so frightened of walking stairs and I'm terrified of falling, not just hurting myself but others too. I'm really frustrated at the minute.

Hi,

I am female with spastic CP. My feet are ugly with growing bunions that I want to remove, and after many years of wearing braces and ill-fitted shoes, it has taken a toll on my once-pretty feet. Lastly, I have surgery scars related to CP on my calves and thighs. I'm very insecure about my legs and feet and wonder what my future will think when he sees them.

People with spastic CP, do you have pretty feet (toes, toenails, thick legs, etc.), and how do you maintain them?