I'm sort of thinking about getting a wheelchair

For long trips and outing such as the one ive just been on. Id love to be able to do all the sight seeing but I get so fatigued from walking and it hurts and my legs are so unstable that I’m constantly getting left behind or having to opt out of coming out if I’m in pain.

I just feel like if I had a wheel chair it would be mean Id have the freedom to really enjoy these trips and see everything without using all my spoons and guaranteeing a bad pain day.

I’m permanently reliant on my cane and I wonder if it might be good to get a wheelchair for trips? Not all the time but just to give me more freedom to enjoy travelling.

I have Ehlers Danlos syndrome, fibromyalgia and degenerative disc disease and Id really love it if anyone else with these conditions who uses wheelchairs could tell me how it’s been for you and how you came to decide to use one?

i was not an angry child.
i laughed and danced and read every
science-fiction novel i could find.
my walls were covered with inspirational
quotes: the stars and the moon and
everything in between. i was
invincible, untouchable, made of diamond.

what changed?

did i slip into a new persona
with each label i tried on?

did ‘queer’ bring with it a red-faced
protestor, holding a picket sign?

was i reborn holding scissors 
when i was 'depressed’?

when i adopted 'disabled,’ did i adopt
a new child, a new self
who shook her cane and screamed at the sky
she had once looked to for strength?

did i realize oppression is better
than any prescription cream for seeping into your pores
and filling you up from the inside?

i am made of glass, i think.
and now i know how to be angry
without breaking myself.

this took me a long time to learn.

—  to the young dreamer
Sexy Fun Times in the Elevator

So I’m in this elevator at the supermarket, right, (cuz it’s got two levels) and this couple get on with me, and he’s in a wheelchair (with a scar running down his back like alotta quads have) and she’s a cutie…

And they’re talking quietly and suddenly she just runs an affectionate hand down his scar and unghhhhh….

It was such a beautiful moment…I’m sitting there in my own wheelchair in the corner of the elevator - on the one hand wishing I hadn’t rumbled into this intimate moment and yet at the same time happy I did…

Cuz I want that.

Not the scar thing - cuz I’m not a quad so I don’t have one…but to have a pretty girl kiss me where it hurts, you know?  Cuz sometimes in the dark the whispers tell me I can never have that cuz what do I have to offer?

But then I catch a glimpse of a beautiful moment like that and….

I have hope. 

In regards to the reblog about ‘independence’:

I wanted to make a good response to it, but the truth is, this is a touchy subject for me. For one, because my parents spent years of my childhood telling me how I would never be ‘independent’ and pushing down any dreams I had of driving or living alone - (both of which I did end up doing, though not anymore). So when people say to me, “Oh you are so independent,” it immediately gets me in defensive mode. And it’s such a slap in the face too, like because their idea of disability is complete dependence, as if I should be rewarded for taking myself to the bathroom or getting my own cereal. And there are people in my life, like really in my life, who still think I can’t do either of those things. Not that there is anything wrong with needing help with those things, but I think it goes to a larger problem of these people in my life only seeing my disability and never actually seeing me or what I am capable of.

As a disabled person, I personally don’t want to be applauded for doing every day basic things, even when some of those things are actually hard for me to do. I want you to recognize me for my writing skills or my art skills or my abilities when working with children or my hysterical filthy sense of humor. But don’t notice me because I can brush my own hair. (unless you are another disabled person and you want to ask me where I got my awesome cool pink long-handled hairbrush! Target, the answer is Target.)

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Disabled // Queer // Femme Trans Boi (he/him/his) // Latinx // Punk // Radical

My contribution to the Trans Day of Visibility! Fuck gender norms, I’m making my own definition of masculinity, and reinventing “pretty boy swag.” Reppin’ it for all the other disabled qtpoc folk out there. Rise up and let your voices be heard! Never be silenced, never let this world erase you. Live your truth and be proud, because you matter. Your voice, your presence, together we show the world that we matter, that we’re here and that they’re not taking shit away from us. No matter how much they oppress us, we ain’t goin no fuckin’ place! Keep on living your truth, and living authentically. You are beautiful and valid. Always remember that you matter, and that you are enough! ♡ ♡ ♡

Official #NoShameDay

On April 17, 2015 (Friday) will take place the official #NoShameDay for the whole disabled community.

People with disabilities have a lot of insecurities about their bodies or meaning and value of their life. Many of them are ashamed of their physical or mental illness and closes on itself in their homes. How do I know that? Because I used to be one of them. I was born with cerebral palsy and I was using a wheelchair until I was 7, now I’m fighting with depression. I’m not ashamed about my physical and mental illness anymore. I accepted it and now I’m fighting for a better life.

Some people don’t have strength to fight for themselves so we have to helped them and encourage them! Being physically or mentally ill should not be linked with shame! Physical or mental illness can happen to anyone and there are no exceptions!

If you are physically/mentally disabled and you are not ashamed of it or

If you have someone in your family who is disabled and you are not ashamed of it or

If you are still fighting to not be ashamed of it but you need some support, encouragement and love or

You want to help others to begin to love yourself and not be ashamed of who they are because they are strong, beautiful and worth it

Post your selfies, confessions, feelings etc. with #NoShameDay tag at April 17, 2015!!!!

SHOW US HOW BEAUTIFUL YOU ARE!

Please, reblog this post and spread the word!

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Part 2:  The woman I’ve become

Oh, how much has changed since I survived & graduated high school (class 2004).  The teen years weren’t horrible; I continued to excel, & ended up graduating as Valedictorian, & I had a small group of friends that I loved.  But I was eager for more that high school didn’t provide - I wanted to go to college.  

College (majored in psychology, minored in African American studies) was the time that I became independent in a safe environment.  I learned how to take care of myself by learning life skills like washing laundry, how to manage money, time management (& mismanagement.. plenty of late nights in the dorm writing papers & talking with friends), developing adult interactions with my professors that were unlike the ones I had in high school, learn that I’m responsible for myself & my education - no one else was, & how to deal with people who loved me, & didn’t.  The latter was a true test because I was treated differently by some because of my disability, & it hurt.  It took me graduating & distancing myself from certain individuals for me to know that yes, not everyone will be accepting of me, but there are many folks who would.  

That fact became true when I went to grad school.  It was grad school where I “reinvented” myself, so to speak.  I went “back home” to my alma mater, but I wasn’t the same 18, going on 19 Vilissa - I was 24, going on 25, & I knew who & what I was.  I was more confident, knew how to value my education more (& yes, time management was on point strong… as you get older, you value sleep, lol), & I was serious about doing this social work thing, which was what I went to school for this time around.  At the time, I didn’t know that disability advocacy would be the work I’d do with my education, but I was open to learning any & everything that was provided to me by my professors, whom I built incredible relationships with, as I did in undergrad.  

After graduating with my MSW, I wasn’t sure exactly what I wanted to do.  I knew I wanted to make an impact, but doing the “traditional” social work jobs (case management, therapy/counseling) didn’t make my heart sing.  What did?  Telling my story as a disabled Black woman, gaining a firm grip of being proud of belonging to 3 minority groups - African American, disabled, & female.  It took me connecting with other disabled women, esp. disabled women of color, to strengthen that pride, & to figure out how to make this into a career.  I took a leap of faith on July 19th, 2013, & created Ramp Your Voice!  RYV! is my way of empowering disabled women who looked like me, but were ignored within the disabled community & the racial/ethnic groups they belonged to.  My advocacy is inclusive for all disabled persons, but it is disabled people of color, & women of color, that I focus on.  

Through the missteps & triumphs of finding myself, my pride, self-love, positive body image, knowing that I’m deserving of love & a supportive partner, & knowing that being “different” is a blessing, I have no shame.  There’s no room for shame within me - God gave me this life, which is a hard one to live, but as my favorite poem from Dr. Maya Angelou states, “Still I Rise.”  I rise above the ignorance, the prejudices, and even when I stand in my own way…. I rise higher and higher.  No one, not even myself, can stymie my progress - whatever I’m here to do I’ll do until I take my last breath, & dammit, I’m no where near done. 

Hello, everyone!

I need your help!

The petition for Disney to make a princess with a disability is less than 400 signatures away from reaching 7500!

It would mean the world to me if you could sign it and signal boost this post so that other people see it.

Link:

change.org/p/the-walt-disney-company-create-a-princess-with-a-disability

If you’ve already signed it, or if you’ve already reblogged some of my other posts and have shown your support, thank you so much!

Selfie day for physically disabled people! (April 11)

With all these selfie days going around, it only seemed right for a selfie day for physical disabled people! It will include people with all types of disabilities, whether invisible or not! We’ll have a bunch of fun and it’ll be awesome to see all my fellow disabled people!

Edit: Fixed a few typos and realized that we should have a tag! The tag will be #disabledselfieday. Please reblog again if you did before.
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To know my journey as a Black disabled woman, you have to know my past.  

I was born with OI (Osteogenesis Imperfecta), better known as brittle bones disease.  My beloved Grandmother raised me in a loving home, & showed me what unconditional love was about.  I have part of her name, & have always been proud of that name - Vilissa.  Unbeknownst to me until I reached adulthood, Vilissa is French, & means, “to love & cherish life.”  How fitting of a name for a young disabled Black girl who was smart, caring, loving, fun, kind-hearted, sassy, loved to learn, & knew how special she was by the praise she received at home, at school, and from those she met.  

The young Vilissa would experience many successes as she went through school, which empowered her because she knew she was just as good, if not better, as anyone else.  Her excelling in every subject motivated her to do well in the subjects she loved - reading & writing.  She had no idea how powerful words would be to her as an adult, but at this time, she loved reading her Baby-Sitters Club books, & writing in countless journals, sometimes creating worlds & characters that didn’t exist, but her imagination & ability to tell a story grew profoundly.  

As I grew into my teen & adult years, I changed in ways that I didn’t imagine, but the loving, supportive foundation I had in my younger years caused me to be steadfast as I grew & navigated an able-bodied society.

This is Part 1, showing my years from 1st birthday to 12 years old.  

Image:

The Communication Bill of Rights

You have the right: 

  • to express feelings. 
  • to understand communications.
  • to reject.
  • to request information.
  • to have access to information.
  • to be communicated with in a dignified manner.
  • to aids, services, and resources.
  • to be listened to. 
  • to be included in social interaction. 
  • to learn about yourself. 
  • to learn about life. 
  • to be offered choices.

Source

Thank you Everyone

I wanted to post this update as a thank you to everyone that has helped me with re-blogs, donations and making cc for me. 

Since i made my last post i have received £283 worth of donations showing that re-blogging posts i made really have helped an awful lot 

I hate to have to do this and ask people to help but without all of you guys i would not be where i am now, but i know i still have a long way to go.

I realise people have not really seen what my life is actually like so i have taken a selfie of me on my pillow fort on the sofa which is how i spend every single day. I realise it is not the best of pictures but sharing all this information and putting myself out there is a very hard thing for me to do. 

I think i am a positive person especially when it comes to my disabilities, but now it is starting to wear thin on me having to just staying lying on the sofa everyday, when all i really want to do is be out to have a tiny resemblance of how my life used to be. 

All i can ask is please i know it may not be something you want to post on your blog but i would be so grateful if every person that saw this re-blogged it, as i am at the point where i am crying trying to type this up as i do not know where to turn 

If you would like to read more please see 

www.gofundme.com/wheelchair4hayley

or 

you can donate via paypal here


***** just extra info regarding the NHS I have exhausted all avenues available to myself, the NHS will not provide a chair needed due to the wheelchair scheme now not running in my area, due to the fact people were simply abusing the scheme. Therefore I am affected by what we call postcode lottery, which is horrible and harsh reality here in the uk ****

 I want to get a chair and aids that will last me a lifetime, so that I never have to be in a position again to not have something that is a necessity to me

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This is me. My name’s Kesta. Hi :) I was born with spina bifida (Myelomeningocele). This basically means I can’t walk (along with other conditions). When I was younger, I would walk with the help of crutches and long-legged braces. That stopped around high school because it’s quite difficult to carry around my own weight AND stainless steel braces and get to classes on time. So I’ve used my wheelchair ever since then. 

I was born in St. Joseph, Trinidad & Tobago & grew up in Queens, New York. I’m an only child so I had no children around me to play with much. I made friends anyhow and that’s because of what my mother told me and has stuck with me to this day. She said, “You can’t jump the rope, but you can turn it”. I would play double dutch with the other girls. Of course not the jumping part, but turning the ropes and singing the songs were the highlight of my elementary school days. 

I excelled in school because my teachers did not coddle me and pushed me to see my talents and achieve my potential. I’m grateful for them. I was in the gifted and talented program, honors throughout my middle school & high school years. I LOVED learning (I still do).

I have my BA in psychology w/ a minor in counseling. I planned on pursuing a career in clinical psychology, because there’s a history of mental illness in both sides of my family. I no longer have that desire, but that’s for another post.

I’ve never felt ashamed of my disability, thanks to great friends and parents who focus on what I CAN do and are realistic about what is a struggle for me.

I’ve had a boyfriend, gone on road trips with friends, rode a roller coaster (P.S. I HATE THEM), spent time away from my parents on weekend retreats, and enjoy concerts to this day.

Currently I’m unemployed, but I volunteer my time because I can. I have no shame in not earning money because money’s not important to me. Thank God I have family to support me. And I firmly believe that God provides. At all times. 

So, that’s all I can say for now. Feel free to contact me to chat! :)

My name is Nat. I’m 22 years old, a student, and an activist in North Carolina. 

In the last year alone I’ve been: 

* at risk for homelessness
* unable to access food and medication
* going through dangerous and risky withdrawal for my medications
* unable to see my doctors
* unable to contact or see my mother

I’m currently unemployed and desperately trying to find work. However, due to my disability, I’m limited on what I can do or where I can apply. I don’t know how to drive and the closest bus stop is an hour’s walk away, which is difficult for me to access. I have on friends when they are able and they often aren’t.

How can you help? I’m trying to raise at least $400 to afford driving lessons before my learner’s permit expires this July. My mother managed to get me a used car but since she doesn’t know how to drive, she cannot teach me. She also cannot help me with any monetary expenses over $50 since her husband is currently hospitalized. 

If I could drive I could:
     look for (and hopefully find) employment further from my home
     not have to walk an hour from the closest grocery store or the food bank
     be able to visit my doctor
     engage in more local activism
     visit my mom
     and not have to inconvenience others for transportation.

Please if you can, donate a few dollars here or at my paypal (the button is on my tumblr page) and share if you are able. Thank you so much!

There should be a selfie day for disabled people similar to “Blackout day” because disabled people also aren’t portrayed as beautiful by the media and also it’s disability awareness month. Tumblr let’s make this happen. (PSA: not trying to detract from blackout day because that was very important and much needed.)

Reblog or note if you think this is a good idea. If it gets enough notes we can pick a day

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Since today is #noshameday I thought I’d share my story! My name is Francesca and im 16 years old. I was born with a congenital disease where none of my bones fused correctly together. When I was three I started taking ballet classes and I fell in love! When my family moved to America opportunities started opening up for me. I began working with a professional ballet company and by 15 had signed a contract that would send me to Atlanta to finish high school and join their company! I was so amazed that I ignored all my chronic back pain. There wasn’t a day when I wouldn’t cry from pain. Eventually it got so bad my doctor ordered me to take three months off. So I did but things got so bad…. I lost 40% of the feeling in both my legs, I began having seizures and I was bed ridden. My doctors and I began looking into my treatment and discovered my back was broken. Like, destroyed. Damaged nerves, fractured vertebrae, herniated disks- the whole nine yards. They sent me in for surgery (about a month ago) to hopefully fix me. I won’t ever return to ballet and I’ll only get 80% use of my legs. Because my body has been under so much stress I’m bleeding internally. They can’t get me into surgery for that until im off pain killers. The spine surgery takes a year to heal. For the next year I’ll be getting transfusions to keep me alive. Things are so difficult but I’m happy right now! Just because I look fine on the outside does not mean im healthy.

Here are my Selfies for No Shame day :) 

I really wanted to take part as i really have a hard time sharing pictures of myself and really feel uncomfortable. 

Here we have me in my wheelchair ( i really hate having pictures taken in it so there are not many) 

I have NEAD (non epileptic attack disorder), having up to 30 seizures a day! Fibromyalgia, drop foot, Chronic fatigue syndrome, full time wheelchair user, gluten intolerance - due to all the trauma from what my body goes through, sever speech impediment and temporary blindness for 20-40 minutes after a seizure, chronic pain. 

I take a million and one meds a day and never feel good!

I have had NEAD for 10 years and i have progressively gotten worse up to the point where i now have all the above :) 

Currently have a GoFundme running as my Local NHS service withdraw the wheelchair scheme due to people abusing the system! 

Please read my whole story here