Differently Abled (fly your freak flag high)

[Semantics]

Originally Posted by SuperFemme

How do you find the gift in what others find a curse?

Every other week I spend all say at the Children's hospital in the oncology/ hematology ward with my six year old while she has her iron infusion. It's a slow drip and takes about 6 hours.

She's usually the only one with hair because all of the other children are there getting chemotherapy.

My kid may never get jokes. She may never stop toe-walking. She may have to wear peltor ear protectors to the movies into adulthood because she's terrified of loud sounds. She may grow up to work in a cubicle.

But she will grow up.

[SuperFemme]

Originally Posted by Semantics

Every other week I spend all say at the Children's hospital in the oncology/ hematology ward with my six year old while she has her iron infusion. It's a slow drip and takes about 6 hours.

She's usually the only one with hair because all of the other children are there getting chemotherapy.

My kid may never get jokes. She may never stop toe-walking. She may have to wear peltor ear protectors to the movies into adulthood because she's terrified of loud sounds. She may grow up to work in a cubicle.

But she will grow up.

Semantics, you are one HELLUVA parent...I've sat in the oncology ward getting chemo and my absolute favorite people are the children. They are so honest and open it moves me to tears. I am humbled every time.

What are peltor ear protectors? I literally had a helmet for some months as a piece of my skull was left off due to swelling. I woke from a coma paralyzed on my right side and suffered from seizures almost every day.

Today, when I get stressed I have focal seizures which my beloved can always sense coming on, and if they progress into a grand-mal hy holds me and whispers me through it. Of course I come to and deny it happened. Ha!

The understanding and support of even ONE person can change the course of a different-ability IMHO.

[WheelieStrong]

i use a powered wheelchair due to living with Cerebral Palsy, and i have weight issues.
I have both a Colostomy and a Urostomy which make me feel completely ugly but i am so much more independant since having them.. But they won't help with dating i don't think

i've recently been told i am diabetic

i have mental health issues that are acknowledged, and are similar to bipolar disorder but no one will diagnose me because i don't fit a neat little box.
i have anxiety, panic and self harm issues.

i also seem to have an addictive personality so avoid things a lot.

i have control related food issues

i do beleive that all these things have helped make me the person i am today, and i can be an incredibly nice, and even romantic person but i think i am going to be single a hell of a lot of my life

[SuperFemme]

Originally Posted by WheelieStrong

i use a powered wheelchair due to living with Cerebral Palsy, and i have weight issues.
I have both a Colostomy and a Urostomy which make me feel completely ugly but i am so much more independant since having them.. But they won't help with dating i don't think

i've recently been told i am diabetic

i have mental health issues that are acknowledged, and are similar to bipolar disorder but no one will diagnose me because i don't fit a neat little box.
i have anxiety, panic and self harm issues.

i also seem to have an addictive personality so avoid things a lot.

i have control related food issues

i do beleive that all these things have helped make me the person i am today, and i can be an incredibly nice, and even romantic person but i think i am going to be single a hell of a lot of my life

Welcome! I'm so glad you shared with us. I bet your spunk, personality, and will to live make you incredibly attractive.

Also, YAY for you for gaining more independence with the procedure you had. Again, those things do not make you un-datable. They add to the whole package.

[Canela]

Originally Posted by SuperFemme

The understanding and support of even ONE person can change the course of a different-ability IMHO.

BEAUTIFULLY STATED!

[Andrew, Jr.]

I don't have kids, but have nieces and nephews. I also have kids in my neighborhood. My nieces and nephews and great nieces and nephews cover all age ranges from newborns all the way up to mid-30's.

They all know that I am different. It is very obvious for them. Let me give a good example. I went to dinner and was wearing black khaki pants with a navy belt. I thought it was black. I struggle with reading to them if they ask me for help with homework. It breaks my heart. Math is nothing short of hell. I point them to someone else for help. And my gosh, kindergardeners are being given computer classes. I can barely get on here. And these kids today have the knowledge and computer savvy - it blows my mind.

Now mind you, I can teach them how to swim, throw a football spiral spin, throw a curve ball, talk sports, smoke cigars & pipes, and all about boating.

I love kids, but am very grateful that I don't have any of my own. The support of 1 person is the difference between being 6 feet in a hole vs alive for me.

[Lady_Wu]

I have a number of autoimmune disorders. The most visible ones are MS and the damage caused to my eyes by MS. With the MS, I generally walk with a forearm cane, sometimes two if I'm in a flare. The one I use the most is decorated with flowers and butterflies and the Human Equality sign. When I'm in a store that has them, I use a motorized scooter to keep from getting utterly fatigued. Also when I'm out in the sunlight and/or a store, I wear a black patch over my right eye. If I don't, I get literally blinding pain in both eyes and a severe migraine. I'd like to get a nicely lined pink patch with lace!*smile*
People around here are known for their friendliness. But when I go out,say, grocery shopping for instance, I get DOUBLE points-one for being crippled and another for being half-blind!Amazing how friendly people turn out to be then! They TALK to me-gasp!-they offer to get things from the high shelves. They even offer to help my friend who drove me to the store carry the groceries to the car!I'm not meaning to make light of what being disabled is like. But I do try to find humour in my situation when I can. That makes bearing it much easier.
Later I'll write a post on what my diseases have taught me. This doesn't mean that I WANT to have them, or that I don't sometimes scream in frustration over my limitations now. But I HAVE learned lessons from them that I might nit have learned otherwise. But that's a different post.
Lady_Wu

[SuperFemme]

I wish I was in Chicago. I just learned that they have a "Disability Pride Parade" and Eli Clare is the Grand Marshal this year. The parade will be Saturday, July 24th in downtown Chicago.

I am copying their mission statement, because it made my heart swell up big.

http://www.disabilityprideparade.org/home.php

Our Mission

The overall mission of the Disability Pride Parade is:

• To change the way people think about and define “disability”;
  To break down and end the internalized shame among people with Disabilities; and
  To promote the belief in society that Disability is a natural and beautiful part of human diversity in which people living with Disabilities can take pride.

The specific objectives for the parade are:

• To organize a fully inclusive, annual event that will celebrate and strengthen the pride, power, and unity of people with disabilities, our families, and allies;
  To generate national visibility of the Disability community

At the request of Sage Publications, Sarah Triano wrote the following definition of "Disability Pride" for the Encyclopedia of Disability:

" 'Disability Pride represents a rejection of the notion that our physical, sensory, mental, and cognitive differences from the non-disabled standard are wrong or bad in any way, and is a statement of our self-acceptance, dignity and pride. It is a public expression of our belief that our disabilities are a natural part of human diversity, a celebration of our heritage and culture, and a validation of our experience. Disability Pride is an integral part of movement building, and a direct challenge to systemic ableism and stigmatizing definitions of disability. It is a militant act of self-definition, a purposive valuing of that which is socially devalued, and an attempt to untangle ourselves from the complex matrix of negative beliefs, attitudes, and feelings that grow from the dominant group's assumption that there is something inherently wrong with our disabilities and identity.'

"Dr. Martin Luther King, Jr. once wrote, "One must not overlook the positive value in calling the Negro to a new sense of manhood, to a deep feeling of racial pride and to an audacious appreciation of his heritage. The Negro must be grasped by a new realization of his dignity and worth. He must stand up amid a system that still oppresses him and develop an unassailable and majestic sense of his own value. He must no longer be ashamed of being black." Although there are many barriers facing people with disabilities today, one of the single greatest obstacles we face as a community is our own sense of inferiority, internalized oppression and shame. The sense of shame associated with having a disability has, indeed, reached epidemic proportions. Disability rights movements in different countries have made many gains in the area of civil rights over the past decade, but what good is an Americans with Disabilities Act or a Disability Discrimination Act if people will not exercise their rights under these laws because they are too ashamed to identify as being disabled? "As long as the mind is enslaved," King wrote, "the body can never be free." As long as people with disabilities remain ashamed of who we are, we will never realize the true equality and freedom we so desire. We must first take pride in ourselves as a community. We must no longer be ashamed of being disabled.

"Dismantling centuries of internalized oppression, however, and promoting a widespread sense of Disability pride is easier said than done. Unlike other civil rights movements, people with disabilities do not always have the benefit of a generational transfer of disability history and pride through the family structure. There are no "disability churches" per se, neighborhood enclaves, or other communal institutions where people with disabilities can come together by choice and consistently receive positive messages that counteract the depredation wrought by the onslaught of cultural terrorism. There is a tremendous need to create a counterculture that teaches new values and beliefs, and acknowledges the dignity and worth of all human beings. Disability pride is a direct response to this need."

Sarah Triano, National Disabled Students Union

"Today marks the beginning of our efforts to develop a whole community of people with disabilities and allies who are proud to be who we are, who do not see ourselves as victims, who expect more from ourselves and those within our community, and who are committed to building an inclusive community that recognizes the dignity, humanity, and worth of all people. We must put our efforts into transforming the hearts, minds, and souls of our people, for that is where our true power lies. As the great leader of our movement, Ed Roberts, once said, "My ability to regain the pride in myself as a person with a disability is one of the most important things that's coming out of what's happening here today." Whether or not Ed Roberts and his comrades successfully won regulations for Section 504, they left that important fight in our history with a new sense of pride in who they were - and that is their legacy and our heritage…. a heritage which I cherish and celebrate fully. I am Disabled and Proud!"

- Sarah Triano

[dixie]

Freak flag flyin' high... (and forgive me, this may be long...)

Most predominant is my laundry list of "mental" illness, with bipolar being at the top of that list. I do have bouts of depression, but luckily, I generally experience a level of hypomania on a day to day basis. For those that don't know, it pretty much means that I am one of the most perky, chipper, energetic folks you will meet. Yeah, I might get sad or angry but because of the mania, it usually disappears within moments. Also, things that anger or hurt others usually just bounces right off me, like that whole "water-off-a-duck's-back" kinda thing. To me, that's a blessing. It means I'm almost always happy, optimistic, and smiling like a darn fool! lol


Anyone who knows me knows I like being unique, so even my illnesses are unique. lol I suffer from a rare form of migraines called hemiplegic migraines. I spent months going in and out of the hospital, and a huge battery of testing had to be done to diagnose this condition. The reason for that is because this form of migraine can be easily misdiagnosed as stroke or epilepsy. It starts out with confusion. My brain doesn't seem to function and I can't form words or sentences. It sounds like I'm babbling. I have prolonged aura at onset, which means I see little sparkly stars and circles as a "warning" that the migraine is going to come. The aura can last anywhere from a few minutes up to a few days before the actual pain ever comes. The aura is so strong, that it overpowers my vision. Next comes the ringing in my ears, which then leads to me going "deaf" for the remainder of the attack. (The ringing goes away, and I am left with just a dull "deadness". I can't hear anything at all.) Next comes the numbness. The entire left side of my body goes numb. Sometimes one limb at a time, sometimes all at once. I'm pretty much temporarily paralyzed on that side. Along with the "paralysis", my tongue and throat swells. I can't speak, can't swallow, and sometimes feels as though I am choking. All of these symptoms are just the "warning signs" before the pain hits. And by gosh, it is some of the worst pain I've ever felt in my life. I lay in the cool darkness with a cold rag on my head, sobbing and rocking, feeling like someone has stuck an axepick in my head. It's horrible! The after-affects aren't good either. Once the pain subsides it takes a while to get my sight and feeling back. I'm usually very weak and end up sleeping for hours. It takes quite a while to be coherent again, and wreaks havoc on my memory. When I was first diagnosed, I was around 19 with a young child. Because these damn things hit so often and so unexpectedly, the doctors would not allow me to drive or even be alone, for over a year. Luckily, as I get older the episodes get fewer. They still do their damage though, and have pretty much eaten away at my memory capacity. I can't really find a blessing in this, although I have tried...lol

Another weird thing...my heart didn't grow when I was a child. Supposedly your heart grows as you grow, but according to my cardiologist, mine is still the size of about a 3-4 year old's. I'm not supposed to do anything to overly strenuous or lift anything too extremely heavy. But I also shouldn't be overweight and shouldn't smoke, but hey...ya know...

Oh, and I was just put on diabetic pills last year, because my bipolar pills finally pushed me over that "borderline" sugar level... yay me! lol

It's all good. I like being unique and different. I consider my whole life "outside the box"... (My dad lovingly calls me Abby Normal...lol) Plus, it helps me relate and understand a little of what others go through...