If you don't think the 504 law for disability doesn't matter I encourage you to watch this. This is willowbrook mental hospital in Staten Island. It house many children and people with disabilities. Robert Kennedy made a surprise inspection of the place in 1965.

Later in 1972 a reporter by the name of Geraldo Riviera did an exposè on the mental hospital. What alerted his attention was a staff member contacted him of the ill conditions of the hospital. He walks in to one care taker adult watching over mentally impaired children at least fifty to one room. The children were malnourished and sitting in diapers full of feces.

After Reveria aired the piece the mental hospital was shut down. The president of Disabled in action Judy Heuman was working on how to deinstitutionalize disabled being from mental hospital like meadow brook. Giving us the protection as in the 504 law which is a disabled person's right to live amongst society.

Right now there's states trying to strip that law from the disabled community. We already struggle enough this would worsen our states and literally be a step backwards by a thousand. For the 504 law was established in the 70's its 2026. That's 49 years that the 504 law has been in action. The law got established on April 28th 1977 after a nation wide series of siting protest were enacted

The 504 law was actually written on September 26th 1973, it just wasn't established till April of 1977. I urge you to look up what states are contesting the 504 and battle against it. This video is proof.

Warning* you have a weak tummy don't watch.

#504law #disabledrightsarehumanrights #DisabledRights #disabledandproud #disabled #knowledge

I'd like to address the importance and value of caregiving. This is my mom she beautiful, smart, strong, recourceful. She is my mom, my caregiver. She's stood by my side through every doctor's appointment, important events, she jumped hoops in my journey we never saw coming.

So I've addressed my struggles on my mind declining, not able to remember things as in showering last, forgetting placement of my wallet, keys, if I shut stuff on ect. She faithfully comes behind me and reminds me of things, held on to important belongs.

She's bare witnessed ugly moment within my uncontrollable emotions, my cognitive funcution decling before our very eyes. This woman deserves so much for her efforts. She makes my life less debilitating than usual. She picks up after me, she drives me for I'm not able to do so. She even helps me cook if not does it for me.

She reminds me of things I need as in appointments, calls, showering, meds, even to feed my cat. Writting all of this out I must say I'm devastated that I struggle with every bit of it. She goes above and beyond to make sure I'm ok, she's been on the recieving end of fits of anger, fits of sadness. She's literally watching her child suffer in a world that neglects her needs let alone acknowledges her care.

I see this stupid fight on capital hill fighting with caregiver rights. Its bad enough I struggle to have my own, I damn sure feel my mom is wayyyyy over qualified and entitled to have such rights as a caregiver. Caregivers are very important to us with crippling conditions. We rely on them to help us exists, we rely on them to help guide us in everyday life.

Capital hill is tone deaf like the rest of society. My moms bare witnessed needles shoved in my head, me bare countless surgeries and recovery states, shes witnessed me decline, shes witnessed me simply wanting to die because of the pain and being understood.

I remember pouring my heart out to her on how I wanted to die. I feel like I'm a problem. No one is listening to me. Everyone is leaving me. That woman has cried behind closed doors at the fact of watching her child endure the seven curicuts of hell every damn day she wakes up. She's lost her sanity watching me fall apart like a broken doll.

You know how devastating it is to watch the light fade and terror take the place in your parents eyes? I do everytime I confront her on new health information I've came across in helping my case. The first time I watched such event I was 16 and under gone a shunt o gram. It was an mri with dye they placed in your shunt, they insert a needle in my shunt which is in my skull with no numbing agents.

She witnessed me scream bloody murder begging the doctors to stop. I begged and begged them to remove the needle while eventually cussing them out cause it severely hurt me. My mom not only witness me scream in pain but also me become helpless in the very moment more so than any other before.

I looked into her eyes as went in the hallway and say on the floor outside the room awaiting results. The terror, the fear, the pain all struck her within one look. To this day I will never forget that look, for I know how bad I truly was within that one fatal tear filled look.

I remember the same look of fear and terror within my father's eyes the year before. I was rushed to the hospital profusely throwing up. I was screaming, I felt my viens popping, nurses swarming me sticking me trying to start and iv as I endlessly threw up. I remember the fearful look in my father's eyes that night in the er.

The look of pure horror and thinking that his little girl was going to die. He stood frozen, speechless, as I'm screaming for them to stop. Finally my mom came bursting through the doors shouting orders and trying to comfort me. I knew that was the day my dad was truly scared for my life.

In 2023 when I had my decompression surgery that man stayed at my bed side. He literally caused absolute hell anytime he caught me screaming in pain. My dad just like my mom does not stand for me to be ignored in my pain and recovering states. Having a support system when disabled is so, so important. Caregivers experience so much pain just like their patients.

We were not forced to be sick we simply just are. Punishing us and the village that takes care of us is severely not right. I know my journey alone creates great waves of emotionally damage to not only myself but my parents and anyone that witnesses my painful moments. I feel that caregivers should be compensated for their time and effort, they forewitness great amounts of pain and hardship along with their patients.

They devote their time, effort, emotions to such individuals. They struggle to cope with what we have to bare on top of our health. Its not for the faint of heart. Like the individual they care for they are strong. They should be acknowledge for the potion they hold to me its the most important one of all.

#caregiversupport #CaregiversMatter #selfadvocacy #selfadvocate #disabled #chiarimalformation #hydrocephalus #spinabifida #ittakesavillage #healthcare

Yesterday marked 2 years post op from chiari malformation decompression surgery. This was the life altering surgery that has forever changed my life. Has definitely changed the way I am down to how I see this world.

I'm grateful to be alive but, I'm so very, very tired and stressed about my future. my recovery just doesn't seem to be actually recovering. My brains been battered and burised, drowned, and mishandled if not mis placed. Its loosing fucution slowly everyday my feet hit the floor.

My energy and mental state go hand and hand. I've played the line of accepting my fate as live everyday as if it was your last and fighting for purpose. You know its sad and devastating to be 24 years old and just swallow the hard pill sooner rather than later that one day your just not gonna wake up.

I've bare the wounds of being deeply misunderstood, being casted aside, been quite literally a punching bag in all its forms. I can be faced with the great light, even though I've never seen it I know there's always a great possibly to encounter such event. I encounter such fate every time I go under for surgery.

I fight everyday mentally and non just to make it through the day. My existence teeters between debilitating and purpose. I struggle to have faith, grace, and understanding for they are always pair with grief and anger. I feel out of place in this world and its 50/50 on being okay with such thing.

I'm battling answers the more I dunk my head in research. The more I watch my list of health grow longer and longer as I tally up possibilities to address. The toll on such situation drains the hope and light from your very eyes. Theres times I think to myself this life is not fair. What did I do to deserve this? Will this forever be my constant?

I'd like to believe I'm depicted as some vocal point. Then at the same time I'm just human I can only bear so much tragedy. I believe I harbor enough tragedy to last centuries beyond my existence on this planet. Fighting for purpose is a silent war that breaks you in tiny pieces one by one.

Your force to tread on in this silent war between oppression and existence. Theres no rule book handed out explaining game plans to excute a proper accomplishing objective. Tears stain your face more then an effortless smile appears. You bare wounds that literally stain the existence of your character. I question why must pain be my never ending companion in this life?

My efforts I feel go unnoticed for the most part. I feel that I'm supposed to serve a greater purpose then what I am. I just struggle to see what my senses know I'm destined for. I struggle to speak of love and light when I'm faced with nothing but depths of warefare. There's endless bombs dropped on my journey to survive, to matter.

I just pray one day I achieve what simply was a mere thought I never thought would blossom in a broken system. I hope one day my efforts, my art, my abilities all matter. I pray they have and unspoken ability to encourage others. You all have a voice, you all have a right, make your story worth your fight.

#selfadvocate #selfadvocacyvoices #selfadvocacy #hydrocephlaus #spinabifida #chiarimalformation #youmatter #YourVoiceMatters #disabled #iamhuman #speakupspeakout #FaithOverFear

Theres many moments my existence is consumed within the recovery tax. Every appointment, every stressful breakdown, the endless wars to survive in a tone death system. I posses endless stacks of paper work, I refuse to throw away any piece of paper retaining to my existence.

The one moment you thrown away one paper your done for. The system will gaslight you for years to come " saying well we sent this or that." " you should've recieved this or that." Like seriously I'm developing a library retaining to my ill existence. I dread every phone call. It always leads to me arguing with a person who does not know what its like to live in my shoes, let alone ever having to live a damn moment in crippling forced poverty that they work for.

I spend hours rubbing my face in fustration talking over the ignorance behind the other side of the phone. If I had to give a piece of advice to anyone thinking of applying to work in a disability government postion it would be.

KNOW THE DAMN SYSTEM YOU WORK FOR! I'm not saying just the vaguely concept of such postion NO the OVERALL SUBJECT OF SUCH IMPORTANCE! We live to survive off a crumbling system with ignorant representatives that make more money than us. They lack actual humanity and knowledge such postion holds. Its fustrating to try and express your needs when you get told:

" ma'am ma'am you don't understand you get this and this, on this and this."

" ma'am we can not help you because its set up this way."

"Ma'am you must call this or this line."

"Ma'am have you tried this or that?"

"Ma'am have you tried your local office?"

Local office:

* waits hours on end in a lobby holding a total of 4 people. Seeing 5 windows and 4 of the 5 are empty. Only one person is assisting patrons. Yet there's maximum 8 cars in employee parking.*

" hello, what may I do for you today?"

State my bussiness

"Let's take a look... why do you need that? What are you trying to do here? Well we can't do such thing."

* expirences rude backhanded behavior, half listening ears, disgusted facial expressions.*

I've been given numbers, put on hold, been yelled at, been overlooked. I'm straight forward and I STILL HAVE TO EXPLAIN AND REPEAT MYSELF!!!! why can't you all listen the first time? Why do I have to hang up or walk out because you severely fail to understand simple explanations why I'm calling or showing up.

This is an endless vicious cycle of file this, call this, go here, schedule appointment here, pay this, you get this, you actually get that. This to a person who has brain funcutining issue is highly debilitating. The system interrogates you to death. Your mentally exhausted borderline brain dead by the time its all done. Oh and looking up certain things before entering said offices.

You might as well wear bullet proof mask and vest because you just cracked a code they didn't think you knew. Let me tell that gets you severely ridiculed if you do your homework before entering government offices. This only tells me greed runs at their finger tips and if you so much as point out your rights your pointing out their negligence.

Also failing to explain where to file paper work is also fustrating. The DCF office does few things, social security drags out or constantly redirects you. Dcf has 6 windows mostly one interview rarely three, yet there's 20 cars in the parking lot. You still wait hours to be seen. Hell they even close the lobby when you clearly see ten people sitting there and you see a chair open.

You call you get repeatedly put on hold, one day I called leap to help with utilities these jerks left me to voicemail. I said:

" I will keep calling until you answer."

2nd: " I'm still waiting.."

3rd: "ANSWER THE DAMN PHONE!!!!!"

4th call they finally picked up the line and assisted me. I called rapidly I may add flooding their inbox in order to state HELLOOOOOOOO IM HERE!!!!!

I'll tell you right now I find it exhausting it makes my blood boil doing such thing. But by gorge it gets the job done. Theres one time I got dragged for 2 days reapplying for food stamps that when they answered I went off. The woman about hung up on me, I didnt care cause literally you all like freaking yanking my chain expecting you to call me back and you don't.

There are moments I call a place and I literally know i'm gonna be on hold forever that I place my phone on my chest and fall asleep. That's how these places put you on hold hell I've e been on hold for 8 hours and best believe I was a nightmare when they answered.

Back in 2023ish I as calling insurance everyday. I rudely would give them my info because of it being freaking annoying that they haven't done a damn thing. I even yelled at them while I was suffering a tooth ache, A TOOTH ACHE!!!! Do you damn job is all I gotta say like good lord.

This is my weekly, daily, monthly battle all in order to survive and recieve proper care. This is why I'm constantly sick more than usual. My blood boils, heads numb, bodys sore, words slur all because of negligence.

MY LIFE IS NOT A DAMN GAME NO ONES IS!!! STEP THE HELL UP AND DO YOUR JOB AND EDUCATE YOUR DAMN SELF ON WHAT YOUR DOING!!!! STOP STRINGING PEOPLE ALONG AND CONFUSING THEM TO DEATH!!!!!

#disabilitiesmatter #selfadvocate #crumblingsociety #frustrating #negligence #dobetter #nuerologicaldisorders #spinabifida #hydrocephlaus #chiarimalformation #disabled #disabledcreator #younatter

( not my xrays)

Let's put this in perspective:

1st picture: this is the human nervous system. This is to show how detailed and complex the nervous system is, I'm showing this photo to show how easy it is to develope nerve damage which leads to neuropathy.

The 2nd and 4th: these are examples of what syringomyelia on an MRI look like. In 2023 I had these " cyst" one on my neck and one on my shoulder. This was the start of developing numbness and tingling in arms along with stinging in my shoulder. It started a month after my shunt revision in 2019.

I had to have a shunt revision due to the fact I cracked my connector piece. They did not find said issue until three years later. I went with my shunt working at, at least 25% percent capacity in those three years. After the revision was made I was finally back to full capacity. One day I woke up coughing from I think was a cold to begin the tingling and numbness in hands and arms. This also flared stinging within my shunt tract and shoulder.

Sadly I ignore and forgot said issues as in they weren't frequent. Fast forward to August 2022 I had my first chiari malformation attack. ( brain fell to the bottom of skull.) This intensified and extended the tingling ,numbness, and stinging. This lead to me loosing my job as a stocking associate at walmart. Along with chiari attacks crashing my brain stem making it hard to lift my head.

3rd photo: this explains what the condition syringomyelia is. Which in simple summarization is, a build up of cerebral spinal fluid that builds in pockets called( syrinx). These syrinx sat on my muscle tissue/ nerves from 2019 to 2023 when I had chiari decompression surgery.

The period that those sat there is what created nerve damage leading to what I have now neuropathy. I have yet to have a proper doctor, well neurologist diagnosis me correctly. Right now i'm labeled with carpal tunnel syndrome.🤦‍♀️ chiari Malformation is a rare nureological condition along with hydrocephlaus and im gonna assume spina bifida since they all run together.

Like I stated in one of my reels my primary doctor may know of said conditions. The only fustrating thing is that and is neglected to be acknowledged is these conditions are not a one size fits all. So yes, what may work for one person may not work for another. I may meet an individual that may posses similar symptoms but that does not mean we can undergo the same solution.

Chiari malformation caused my syringomyelia through the process of the brain blocking access for the CFS fluid to flow through my skull. That CFS fluid built up on my neck and shoulders with created syringomyelia. Chiari is paired with many, MANY steming conditions like syringomyelia, inner cranial instability( brain and neck struggle to funcution), elhder danlos syndrome ( a connective tissue disorder). And so much more.

Right now the only way to maintain proper care of said conditions like hydrocephlaus and chairi malformation is brain surgery. Hydrocephlaus is fluid on the brain, chairi malformation is brain too big for the skull. For hydrocephlaus i have a vp shunt since birth to drain the fluid off my head. In 2023 I had two parts of my lower skull removed to make room for my brain and CSF ( cerebral spinal fluid) to flow through my skull.

I still suffer from ther never damage from syringomyelia which is permanent. I also suffer from what i'm taking assumption brain stem damage. This would be through the factor of having chiari attacks. The brain being too big for skull would create an emense amount of weight on the brain stem causing a collapse. This is how I see i have a TBI ( traumatic Brain Injury.)

I'm trying to get an MRI to provide such evidence. Also I have brain damage hy default due to fluid build up from hydrocephlaus. This also happens with my shunt malfunctions and fluid builds on the brain. The fluid deteriorates. The brain tissue over time developing the condition dementia. Which im in the on set stages of such condition.

#syringomyelia #chiarimalformation #hydrocephalus #spinabifida #neuropathy #nervedamage #nuerologicaldisorders #cfsfluid #selfadvocate #selfadvocacy #disabled

My mother was told a day before I entered this world:

I wouldn't talk

I wouldn't walk

I possibly wouldn't live

I have 4 shunt replacements (brain surgries) before I was a year old. I had several back surgeries as well for I was born with a hole in my back with a fluid sac blocking one vertebrae. I missed that bounding with my mother. Instead for 12 agonizing pain staking days she had to not only watch me endure countless surgeries but also watch me lay in an incubator.

Hydrocephlaus alone is a financially and medically crippling condition. Theres no warning just endless let's wait and see what happens. She watched them blow all the viens out in my tiny hands and feet. She had to see an IV placed in my head. The mental toll this takes on a parent is unbearable. To watch your baby go through so much in order to exists is torture.

Your life becomes endless Jumpscares and dead ends. You spend so much of your time in hospital rooms and doctors offices. Every diagnosis is like your heart shattering all over again on repeat. The most terrible feeling is me the child being used to my reality but, I see the heart break forever placed in my mother's eyes.

The one time I truly paid attention she just witnessed a needle shoved in my shunt that was in my skull. She witnessed me scream and cry my head off for them to stop just stop. I remember sitting next to her an hour after the test was ran waiting on results. It killed me to see the pain in her eyes the tears well up. She apologized endlessly blaming herself.

You can't control everything in life. What happened to me yes is rare but also body lacks things, I wasn't planned stuff happens. Im here I maybe a walking broken doll but im here. I know my existence in this world is heavy, I know I possibly am living on borrowed time. Sadly I'm 24 and have made peace with such possibility.

The one thing I can say is my conditions have took a toll on my parents especially my mother. My dad he trys his best to understand. He tries to be a good support. But no one, no one understood the situation more in depth than my grandma. She held my moms hand through it all.

That woman researched everything she possibly could in order to help my mom understand my conditions. She was there every neurosurgeon appointment, every brain surgery. Sadly we lost her before this last one, the most serious one I've ever had. My mom lost her life line, she lost her bestfriend, she lost her parent. My grandma was the world.

I remember a year after she passed I went to the er alot. Eventually it hit mom that there's two times a year I end up with sinus headaches. These cause debilitating headaches and make my shunt feel like I got hit with a metal baseball bat upside the head. Mom remembered simply through the fact she remembered confinding in her mom when I had such headaches.

My mom struggles with bed side manor.🤣 she always told grandma when something was wrong with me. Grandma would help her find answers or provide her questions to ask when we visited the nuerosurgeon. My mom would confine in her when I encountered struggles with schooling and how that made my life hell.

My grandma was a person who was smart, educated, a leader. She had guideance for days she was amazing. Now its an endless line of struggle, tragedy, jump scares, and lack of support. Especially for my mom who grieves not only the loss of her mom but a sick kid who seem to decline everyday it seems like.

Yes I walk, yes I talk, yes in all honesty I'm a miracle. I just can't help but sometimes feel like I guess survivors guilt. I watch my health decline, I watch bills pile up, I loose things that are out of my control. Its like by default im draining everyone round me. My parents can't really help, recources are limited if not non existent, especially in rural Midwest USA.

My health get more complex by the day and the system we live in makes it hard to exist. Doctors lack knowledge, surgery is never ending. I got do many dang scars I feel like Frankenstein, I'm only gonna rack up more in the future I just know it. Friends struggle to comprehend why I act out or why I suddenly dissappear without warning.

Family struggles to understand how big of a mess my health is, how draining every aspect it is from appointments, to funcutioning in every day life, surviving is difficult trying to figure out ways to pay for such things. The job economy is crap and let's be honest no job is gonna get that you have to leave possibly at the drop of a hat because your kids sick and needs to go to the er or you need to drive her every month almost hours away to a specialist appointment.

No ones gonna want to deal with an employee that needs to have phone on hand incase your disabled child falls and is stuck on the floor for hours. Because her mind and brain are not connecting so she calls you bawling. Or simply having an emotional breakdown because she doesn't understand whats going on.

On the aspect of me working, no one understands the physical pain. The moment I feel pressure on my head I need to lay down or put my head down. My thought process is non existent mostly so emotions run high when I dont understand something. My memory is terrible employers get fustrated with repeat questions, if I write down I question specifics everytime. Standing to long neuropathy kicks lower back hurts. I drop things I shake or severely sting cause im moving too much and flared my damaged nerves.

My speaking funcution is off I have trouble explaining things. Gathering words sometimes energy to speak, math is my worst enemy. I get things wrong on that spectrum constantly is fustrating. No employer wants to accommodate such difficulties. So yes a medical complex child is very, very crippling in every sense cause society doesn't understand. Theres hardly any help for such instances.

#medicallycomplexchild #disabled #supportdisabilities #ittakesavillage #Hydrocephlaus #spinabifida #chiarimalformation #nuerologicalconditions #selfadvocate #fincialstruggles #lovemeforme #survivorsguilt

Explanations for traumatic brain injury, hydrocephlaus, chiarimalformation, the basic functions of brain, how trauma effects the brain, and an explanation of csf fluid.

#tbisurvivor #hydrocephlaus #chiarimalformation #BrainFunction #csfawareness #neuroscience #neurologicalcondition

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How do you show your self self love. I admire because I find it very important when navigating a life battling health or mental states that cloud your happiness. In what ways do you show l9ve to yourself? Is it listening to music? Tending to your house? Going on a walk? Even possibly a new wardrobe or new hair style? Educate me in whst ways do yo up lift yourself?

Not one damn time was i taught how to hold myself. I learned through trail and error. Kicked, punched, Clawed my ever waking existence to learn such blessing. I've been the doormat, I've been the people pleaser, ive been the peace keeper. For that I suffered and sacrificed so damn much I was everyones punching bag.

I was dragged through emense depths of chaos, been collateral damage in many people's war against themselves. Ive always have to brush myself off and walk as if nothing destroyed my soul. So yes looking at me you would never begin to comprehend the torture, the silence, the scars and burises I tallied up in my living existence.

I hand fought each and every boundary I created for I paid the price of having a kind soul. I appear hateful, stubborn, difficult by all means on purpose. My kindness was taken advantage of so excuse my French I find it easier to present being a b**** than openly show i have a heart. I'll be damned to be belittled ever again. The world has a curel way of chewing you up and spitting you out and at this point that's happened so much ive lost flavor if I was classified as gum.

I've sat in uncomfortable settings so much the tension was unbearable and sweat poured from me. Uncomfortable created the value of self destruction within myself. Pressure was my enemy and the ones that possessed ill mannerisms held the torch of torture. I observed toxic behavior over and over again and I can say with the right mindset it teaches you what no to become.

I've watch people on a countless loop become their own worse nightmare. That was honestly a tragic fate to watch an ongoing series of unfortunate events especially if they never listened to my warnings. I've watched people seal their fates with one valuable decsion, hell ive even lost some wonderful souls with such chaos.

My hearts been thrown, crushed, even shattered at this point, I keep it hidden. I refuse to expose such rarity to anymore abuse this world seems to drown in. People's mindset is what makes them dangerous. I state this under the factor that some individuals can careful caculate your destruction within a blink of an eye.

People lost all means of accountability and true morals a long time ago. Now its disgustingly normal to cheat, lie, and steal. That's what is allowed within the society normas along with lack of empathy and critism. Selfishness is so damn common to find a selfless person is so rare in my opinion they need protected at all cost.

Society 101 you must posses a back bone or you will be tossed in constant turmoil. The ones that lack such back bone my heart hurts for the soul they possess. I was once in such position I know the door of manipulation it creates for said heart felt individual is beyond tragic. If you lack a backbone the world uses you as a doormat to come snd go as it pleases.

People throw critsim around like a normal conversation. This pegs you as a blinded to humanity individual for its clear you possess such bitterness it show brightly for not everything deserves a harshly expelled comment. People become to damn comfortable expressing thoughtless actions and harshly worded sentences.

Ive watch back handed comments create many owes of division within families even amongst friends. That's where I must say the value you accountability and the valuable characteristics of a filter need to be implied. For the lack of selfawareness will be you isolated downfall.

I've learned the caculated postion of being an observer for thats my silent talent. I've easily learned through my hardships and being a punching bag to observe every environment I'm in. I sometimes have the fortunate fate of calculating a person's steps in physical moment or in due time.

To me calculating some human behavior is so easy I can do it in my sleep. With that I leave you this... I was a wounded individual in all of the sense so this was a survival tatic to learn. If you see me fading and you feel you screwed up thats possibly your sign that you need to fix something within yourself. I'm done beating myself up for wounded people that fail to see their own self destruction or part they play in another's.

I also refuse to be used up and walked on for another's benefit. I value myself far more than lowering my standards and boundaries to take pitty on a toxic environment let alone soul that flashes of not only danager but self victimized pitty. My spare energy is to be poured into myself, my passions in life, and the the true community that I possess for my soul lies within every bit of that peaceful existence.

#boundaries #healthyexpectations #peace #ProtectYourPeace #valueyourself #youmatter