I don’t know Amelia. I do not even know her mother or her father, Joe. What I do know is that this adorable little girl is facing a battle that could mean life or death. She came into this world already against the odds, with a rare genetic disorder called Wolf-Hirschhorn Syndrome. One of the typical characteristics of this disorder is mental retardation. Still, when you look into the eyes of little Amelia, you see the window to her beautiful soul. It shines through her pictures. You can see her will and might – a will that has kept her alive despite odds that see many children with WHS dead before their first birthday.

Amelia needs a Kidney Transplant. She needs it within the next six months to a year or her kidneys will fail and she will die. Her parents do not want her on a transplant list. They wish to donate their kidneys instead. If they are not matches their large family is full of potential donors. One of them is bound to be a match, to keep little Amelia alive longer. She may experience life in her own little world, but it is a world full of love, no doubt. Her mother and father clearly love her very much and her mother is willing to fight to see her child live.

Unfortunately, the transplant team at Children’s Hospital of Philadelphia believes that in spite of her beautiful smile and her ability to display emotion, even in pictures, this child has such a low quality of life. The only reason for this is due to her mental retardation and the brain damage characteristic of WHS. Amelia can clearly still feel and react. She is not what medical professionals deem a vegetable. She merely faces developmental delays that are characteristic of mental retardation. Apparently, this is common practice for patients with MR/DD. It is the Eugenics movement, at its best, trying to weed out those society deems unfit.

Who gives these doctors the right to determine who lives or dies? Why must her parents sit back and watch their child die in six months to a year? Is it not the responsibility of a medical professional to provide patients with medical treatment and preserve life, if they are able to? It seems to me, all Amelia needs to continue living is a transplant. These doctors are breaking their Hippocratic oath by refusing her treatment. This is disability discrimination at its best, disguised as deeming it “what is best for her”.

In a civilized society, slowly letting organs shut down, ones that can be fixed by transplants, seems barbaric. Yet, here we are in 2012 doing this to an innocent, beautiful child. It boggles my mind that these things are allowed to go on in our hospitals and yet they happen regularly.

Imagine back to 1975, when it was still legal to keep a person like me, you know – one in a wheelchair, from attending mainstream, public school. That is a little over 35 years ago. People like me, who could not walk, were deemed unfit to go to public school. Delve just 20 years back from that and people like me were still deemed unfit to live. Because we could not walk, we were believed to have a low quality of life.

Thanks to technical advances and assistive devices, people like me, with physical impairments, are doing magnificent things. Looking at all I have accomplished in my life, I wonder what would have happened to me had I still been deemed as having a low quality of life. Look at young Becky on Glee. She has Down Syndrome, a form of Mental Retardation, and yet she is a bubbly and vivacious actress! Imagine if she had believed she had a low quality of life. She would never have been able to humanize the face of Down Syndrome with the American public, much like her predecessor, Chris Burke, did in the 1980s.

Amelia deserves a chance at a future. I urge her parents not to give up. To them, I say this: I support you and many others I know do, as well. I recommend finding a new hospital, one that sees Amelia as a person and not a diagnosis, because that is what she is; a beautiful little girl, about to change the world with her story.

I urge you to check out Amelia’s picture and read her mother’s heartbreaking tale at The WHS Blog.

Update: Help Amelia’s family out by signing a petition against the decision CHOP has made. To do so: GO HERE.

Technorati Tags: Amelia, WHS, Mental Retardation, Kidney transplant, Wolf-Hirschhorn Syndrome, child, CHOP, Children’s Hospital, Philadelphia

Jack Kevorkian was no saint. I find many faults in what he did. However, I am a proponent of heavily regulated Euthanasia. I believe we, as a human species, need to be more compassionate to those who are dying. We are to our pets. When they are suffering a slow and painful death, we allow them an easier way out. When we know their death is inevitable, we do not wish to watch them endure such suffering, so we do the humane thing and let them die peacefully.

However, by the same token, who determines who is worthy of life? We know what dying is. When someone has terminal cancer, there comes a point where we can identify the impending death. It will come, and there is no stopping it. Patients are made as comfortable as possible, but often the death is slow, drawn out, and painful. If this were our dog or cat, they would be gone in an instant, by putting them to sleep, yet we, as human beings, seem to think it is okay for our loved ones to endure this pain, for us. For one more day, even if they have long vacated their body, or at least the vibrant person we once knew and loved has.

Terminal illness is different than disability. Having a disability is nothing to be ashamed of, yet many are. Having a disability is not a valid reason to want to partake in physician assisted suicide. Many people with disabilities live vibrant, full lives in spite of their disability and yes, even in spite of any pain they may endure as a result of it.

Yet, our society sees those of us with disabilities as broken, half-living, half-human, sub-human, even worthless beings. We aren’t worthy of life because we aren’t really living. I beg to differ. I feel my life is full and rich, in spite of my disability. I feel I have been given far more opportunities thanks to having a disability than many other, able-bodied people I know have been given. Still, some people would think me wanting to die is okay. Some would even encourage and support this decision.

I am reminded of the film, The Sea Inside (2004), starring Javier Bardem. Bardem plays the role of a real life person, Ramón Sampedro. Sampedro was paralyzed in a diving accident. The active Spaniard felt his life ended when he became a quadriplegic. He spent the next 29 years trying to get the government in Spain to legally allow him to commit suicide with assistance. This is a guy who did not try to get out of bed, unless it involved going to the courthouse so he could appeal for his own death.

Instead of trying to live, Sampedro sought death. His condition was not terminal, yet he believed because of his disability, death was his only option. The day he became paralyzed he chose to stop living. Eventually, he defied the courts and convinced a woman to kill him, in the name of love. Yet, Christopher Reeve, whose injury was worse than Sampedro’s (who was not on a ventilator like Reeve) found a way to live for ten years from a wheelchair, in spite of his accident. He also continued acting and directing, putting his influence to good use by trying to help others and educate the world on disability.

Sampedro would not even go into a wheelchair. He spent every day, in bed. He had his nephew and father make inventions to help him do things from bed. Imagine all the amazing things he could have created to help himself live in spite of his disability, if he were up and about. He came up with quite a few clever inventions. He had quality of life, and yet he chose to focus that quality on pursuing death. Sampedro is no role model for disability. Rather, his actions have helped to continue the oppression we experience at the hands of a society who believes we are worthy of death.

There is a difference between disability and terminal illness. One is a condition that may not even have serious health effects other than the inability to walk and anything that accompanies that. Another is an illness that inevitably leads to death. Yes, some disabilities can be terminal, but most aren’t. Still society, as a whole, views the person with a disability as worthy of death as the terminally ill patient is. We are deemed as living broken, insufferable lives.

Honestly, my life is not insufferable. I enjoy life. I feel I have a lot going for me. I just happen to be in a wheelchair. Jack Kevorkian helped kill people who wanted to die. Some of them were terminal. Some weren’t. He did not do enough checking, which is why he is at fault for what he did. He helped people with disabilities like Ramón Sampedro, who were not terminal, because he believed them when they said they were suffering. For this, Kevorkian got what he deserved. It was his fault he did not check his victims out more thoroughly (and many were victims because rather than help them out by encouraging them to live, he helped them die).

If an average person says they want to commit suicide, we get them help. If a person with a disability says the same thing, we often agree, because their life is just that bad. We should be getting them help, too, because any life is worth living if given the right assistance and accommodations to thrive. Today, we have so many more accommodations, making life much easier for those of us with disabilities to truly live. Still society sees us as not truly being “free” until death, and yet many of us feel freedom every day, as we get in our wheelchairs, go to our jobs, go to school and make our own little impact on the world.

One of the most heartbreaking movies I have ever watched is, It’s My Party. So many famous people are in this film. It is about a gay man who has AIDS. As a result, he develops an illness that is slowly going to ravage his body until it kills him. He has watched other friends suffer with this terminal disease, and it is not pretty. Many develop forms of dementia and eventually do not know themselves or others around them. Not wanting to go through this, because the end result is death, as it is terminal, he decides to throw one last party to say goodbye and then he will kill himself, while he still has the strength and state of mind to do so.

This is the kind of illness I am talking about. This man was going to die regardless, so he could either die with dignity or suffer a slow, painful death. This is not about disability, it is about humanity and being humane. He was not going to survive this if he kept living, because the illness was 100% fatal. If someone is suffering like this, they deserve to die humanely. That is their right.

In the quest for equality for the disability community, Euthanasia is one of those subjects that can be quite polarizing. I understand where my brothers and sisters in advocacy are coming from, as they do not wish to see more deaths in the name of disability. I am with them. I agree wholeheartedly. Still, there are moments in our lives when death is truly upon us. In those moments, we deserve the right to die as we wish.

Technorati Tags: physician assisted suicide, Euthanasia, Jack Kevorkian, equality, disability community, humanity, terminal illness, murder

I really wanted to talk about wrestling. I have recently returned to watching WWE after a hiatus. It was an accident really. I was waiting for one of my favorite shows, Merlin, to come on SyFy and I just happened to see The Rock on Smackdown. Ash and I are huge fans of the Rock and many of the wrestlers from the 90s. We decided to watch the next episodes of Raw and Smackdown. Imagine our surprise when old favs like Trish Stratus, Stone Cold Steve Austin and Sean Michaels, the Heartbreak Kid, showed up. After that, we’ve been hooked back on wrestling.

Unfortunately, last night’s episode of Smackdown made me both sad (Edge has been forced to retire) and a little mad. You see, I love WWE. I’ve been watching since I was little. I was such a big fan and wrestling was such a huge part of my life growing up that I sprained my wrist after my brother clotheslined me on our porch when I was FOUR! We used to knock each other around on the only large bed in our house. Well…mostly he knocked me around, threw me, pinned me, etc. I just tried to fight back, as best I could! Still, I loved it!

However, last night I was not very happy with the words of Alberto Del Rio. The sad news that Edge would be retiring was heartbreaking. You see, I understand why he chose to retire better than anyone, as I am in a wheelchair due to a muscle disease. Finding out something you love to do could make you paralyzed is a heavy thing and Edge did the right thing. This is a matter where he needed to listen to the doctors, and though it has been a fun and wild ride, his health is the most important thing.

At first, I thought Alberto was going to be a bigger man, in his storyline. However, when he realized he would not get the World Heavyweight Championship handed to him, he said something very upsetting to me. He said something to the affect that he was glad he made Edge into a cripple. Either way, his words used the word cripple and he talked about his joy in making Edge one.

The disability community is one of the most discriminated against in this nation. For Alberto del Rio to use such a slur, an outdated, hateful slur like cripple in 2011 is disheartening. Further, to imply the joy in turning Edge into a cripple, an implication that such a thing is bad, and that cripples are substandard, is also a devastating prospect for someone like me. You see, I am out living my life DESPITE my wheelchair. I am in film school, raising a family, and being a productive citizen even though I cannot even stand on my own two legs or raise my arms above my waist. Many of us with disabilities are living ordinary lives, and working past our daily challenges because that’s just what we do.

People look up to WWE stars and so the words they say have merit, even the evil ones like Alberto del Rio. Using cripple, an outdated, archaic word that many of us in the disability community dislike, was wrong. For some of us, it is akin to other negative slurs (the equivalent of the f-word to gays). Cripple implies broken, less than, substandard, faulty, or not quite whole. Granted, some in the disability community are trying to take it back (I’m not one of them) and have “crip pride” but this still does not make it okay for someone, especially someone without a disability, to say it on national television.

All of us in the disability community are grateful Adam Copeland did not end up in a wheelchair. There is no denying it is a hard lot in life, BUT, and this is a huge but, for most of us, we follow the old adage. When life hands you lemons, make lemonade. I am not asking for an apology or anything like that, but I am asking the WWE to become aware of their many fans with disabilities and realize the impact Alberto del Rio’s words had on those watching.

Technorati Tags: WWE, Adam Copeland, Edge, retire, cripple, Alberto del Rio, disability, slur, wrestling, Smackdown, paralyzed

When I first heard about all of the crap this girl was saying, I was hell bent on telling her off. I was set to show her that I do not put up with her crap and that she needs to simmer down. I did those things, but then I got to know a few things about this girl, and now I feel so many mixed emotions. Part of me feels terribly, horribly sorry for her. Another part of me wants to knock common sense into her head. Still, I just wish she was not so young and had the wisdom I have, to see that what she is doing is going to make her life even more miserable than it already is.

This girl is 19. I remember being that young. I had been rejected by my family, by my peers, and can still remember how alone and worthless I felt. At that time, I could be a total dick. I figured if I was a jerk, then when I was rejected by someone else it would not hurt so much. I see this in this girl. She has been rejected by her family and I am guessing her peers. It is not right the way she treats people, but she is also doing it to protect herself. This girl is scared and nobody is there to make her see just how worse she will feel once she truly realizes her life has nobody in it and she really is alone.

This girl needs to get a counselor that understands her. Sadly, there are not many who understand trans issues, so while free counseling through WSU is what many students opt for, it may not help her. She obviously has deep seated issues of rejection and hatred in her life. She speaks about her Evangelical family who is bad for her mental state, will not accept her, calls her an abomination, and won’t let her be happy as a transgender person. Family can tear you down and destroy you. I know just how deep family issues can go and how deeply they can affect you.

This girl is alone, and will continue to be alone. Everyone has made sure she has been cut out of groups, because she treats everyone horribly. When people make fun of her, it makes me sad. I am not so different from her in that I am in a wheelchair and transgender, too. When I am not around, I wonder if they talk about me and make fun of me in the same way. Even though I try not to be mean, I try to be compassionate to others and I try to help everyone, I feel rejected, too. For most, I am fun to talk to while on campus, but nobody really wants to hang out with me otherwise. They can hop in their cars and go out to eat, go to the mall, and leave me behind. I have felt that rejection my whole life, and yet the sting never quite goes away.

This girl is rejected because she is in a wheelchair, and these people who can walk, hang out, and have fun together do not understand. They do not understand that the Duchenne MD this girl has means it will be rare if she survives into her 30s. She cannot transition because of the medicine she is on, so she will never be able to transition into a female, due to her health problems. They do not understand how many friends I have lost to Duchenne or probably how many people she knows who have died of Duchenne. They do not understand being the one left out because they are in a wheelchair sucks. It hurts. It makes you feel like you aren’t a part of the group and you do not truly fit in. BUT…I do. I know how most of those feel. I know what it is like to be told you might not reach adulthood and yet live so miserably in childhood due to rejection you wonder if life is worth living.

They do not understand what it is like to be totally cut off from family. These (your family) are the people who are supposed to love you no matter what. Most of them do not have to face such adversity with their parents. If they do, they have not come out. This girl was brave to come out to her family, knowing their religious convictions and yet she chose not to live a lie. The rejection of family is painful and with no friends, nobody to hang out with, this girl has NO ONE in her life. I wonder if any of these people can imagine having no one. It hurts. It makes you bitter and angry and hateful. I have chosen to not get bitter and angry. I turn the hurt I feel by rejection into something positive by trying to help others, instead.

I understand she is mean, but I wish they would try to walk a mile in her shoes. Bitterness is common in people who suffer. That is no excuse, I know, but I think she wants the negative attention. Negative attention is better than no attention and without acting out, she is probably ignored. I know I have been ignored before and it is not fun. It hurts. Still, I am so conflicted because she is mean to others. Her cry for help is not working as no one wants to deal with her. She is expendable anyway because she is in a wheelchair.

She asked me to hang out with her recently, and I did not know how to respond. I do not want to be around her negativity. I get where those who are mad at her are coming from at that level, but the hopeful look in her eye, a look that said I have no one, made me think about telling her we could hang out. I do not want to hang with her, especially if she acts out, but maybe I can get through to her, because once she has no one, she may think her life isn’t worth living. My thought is this (and about nearly any human, who isn’t a murderer or child molester), even if she is mean, she still deserves to live.

Technorati Tags: hatred, rejection, transgender, wheelchair, girl, school, mean, fight, nobody, worthless

I have been arguing with a disabled man on Facebook for the past few days. I say arguing because he has no comprehension of what debate is. A debate is backed up by facts, figures, and opinions based on facts and figures. it does not involve name-calling and finger-pointing. While I have been attempting to debate my points based on knowledge I have acquired concerning politics, he has made broad statements like “all liberals are liars” and other derogatory remarks.

The thread evolved into a discussion on Social Security Disability Benefits, Medicare and Medicaid. This man does not work. He receives Social Security and Medicare because of his health. I would be fine with that except he is a hypocrite. He criticizes others, telling them to get jobs or volunteer. He complains they are not attempting to better themselves and that they spend all day spewing their thoughts on social networks or playing games. He believes that Americans should not become dependent on the government, yet he himself admits he is. He believes the Conservatives are right in cutting back on programs he himself professes he needs.

I feel very strongly about this because I myself receive Social Security and Medicare. I receive them through my father. He died and I get the money he paid in for the several years he worked. I also get the healthcare his checks paid for through the payments he made to Medicare. I am not taking what some call handouts from just anyone. My dad had many jobs. He was a Tool and Dye maker, he worked at a store I believe was called Big Bear, and for most of my childhood and a few years of my adult life, he was a Tax Commissioner Agent for the State of Ohio. That is just a fancy word for State Auditor. He audited large corporations for the state. My father paid his dues and died only a few months after retiring, so I am reaping the benefits of his life of hard work. I have no doubt, if my father was still alive, and I needed his help financially, he’d be helping me.

I also receive state Medicaid, which only covers the 20% of my medical bills that Medicare will not pay. This is vital. My wheelchair alone cost over $20,000. I would not have an extra $4000 sitting around to pay it. Medicare and Medicaid are vital to my health. If I want to remain independent, I need a wheelchair. I need a Hoyer lift. I need my sleep apnea machine so I do not stop breathing at night. These are necessities these programs help pay for, as the added expense of having a disability is quite hefty.

Eventually, I hope to receive waiver services to help pay for Personal Attendant Care. PCA care is essential to any severely, physically disabled person’s freedom. It allows us to remain in our homes and out of institutions like nursing homes. I am one week shy of 30. I cannot imagine the thought of being 30 and in a nursing home. Can you imagine being so young and having no hope for a future at such a young age? No hope for school or a job? The thought is terrifying to me. With PCA services, I can hire anyone to care for me. If Ash is sick or something happens to her, I know I have someone to get me out of bed or take me to the bathroom. These are necessities.

I am not asking to live off the government. I am asking to receive assistance for exorbitant medical expenses that will allow me the independence to become self-sufficient. These go beyond the cost of basic human needs. I did not ask for a disability. I did not bring it upon myself, so I am grateful there are services because I do have dreams of a better future. I dream for a better career. I go to a university, where I get good grades and strive to make my career path a reality. I would one day like to be able to make so much money I no longer need the state and federal benefits I receive. That cannot happen if I cannot continue to have these benefits I do have. Without them, I lose my chance at a future.

Programs like these do not need to be cut for a variety of reasons. First, workers pay in for Social Security and Medicare. They pay for today’s recipients with the promise the next generation will pay for them. The elderly of today deserve to get what they paid to the elderly of their working generation. As much as they pay in for others, they also pay for themselves…their future selves. They are entitled to this money. To cut it would be a travesty. The elderly should not have worries after retirement. It is their time to live out their final days in peace, and yet if the government cuts their services many of them will have to get jobs again if they can or be forced on the streets or into nursing homes.

Second, helping people with disabilities helps the economy. A friend who is a business major told me her economics class book said that PWDs (people with disabilities) have a spending power of hundreds of millions of dollars per year. I believe the total was around $683 million. She told me this last year, so these are recent numbers. When PWDs have money, they spend it. That is normal for anyone who has money. By allowing people to have these programs so they can be independent, PWDs have a greater chance of attaining employment (and eventually getting off government programs). Employment means money and money means spending. If you cut Medicare, Medicaid, SSDI and other similar programs, the unemployment rate for PWDs (which is already horrible) will continue to rise. Also, without money to spend, the number of PWDs’ spending power will plummet, and the economy will suffer for it. If nothing else, we need more programs to help PWDs attain employment because the unemployment level is ridiculous. The goal should not be to take away the programs already there.

It often seems that unless a member of the government has a family member or close friend with a disability (or they themselves acquire one), they do not really care so much about making cuts to the services that help PWDs. Once they have one or a loved one has one, they become fervent advocates in support of such services. A great example of this is Nancy Reagan championing Stem Cell research once Ronald was diagnosed with Alzheimer’s. Instead of waiting until these issues effect them, politicians need to look ahead. One day they will be elderly. One day they could become disabled. Disability is the only minority group a person can join at any point in their life. They should not only care about those with disabilities when they or a loved one becomes one themselves.

We cannot let the government cut these services because they want to save a few dollars. There are plenty of sources (like the wars in Iraq and Afghanistan) that are taking away money from good, caring Americans who want to work, who want to support themselves, and who want to better their lives. We are often the first on hand to help anyone in need in another country, yet we turn our backs on our own people, claiming they are lazy or demanding of handouts while doing nothing to help themselves in return. These services are not perfect anyway and they have flaws, but they are better than nothing and they do help those on them in many ways (reforming the system is a topic for another article).

Stifling anyone’s independence is the least American idea I have ever heard. This is supposed to be the land of the free. I believe we truly should be fighting for liberty and justice for all…even those of us with disabilities.

Technorati Tags: Social Security, Medicare, Medicaid, Health, Disability, Cut Services, PCA, Personal Care, PWD, People with Disabilities, Waiver

December 17, 1996 began early for me. I had to be to the hospital by 6 AM if I remember correctly. It was the first day I was not worried about anything. For some reason I was very calm. I was also certain I was going to die. I don’t know why, but I thought I would. I was having Spinal Fusion surgery. I’d been told without it, I had maybe ten years left to live, if that. My organs would start to crush one another and death would be painful. I had no real choice in this. In matters of life or death we most almost always pick life. I am no different. However, the surgery also came with a 50% chance I would no longer walk.

I was terrified of not being able to walk. My father and Pam always made it clear if you stop walking then you give up. I was not a quitter. Yes, I have a degenerative, progressive muscle disease. The progression was slow, but it was happening. Still, I could not help but feel like if I stopped walking it would be my fault. I would not have tried hard enough. I was under this immense pressure to remain on my feet, so the prospect of not being able to walk was inconceivable to me. It was not an option.

I spent 14 hours in surgery, 2-3 days hooked up to tubes. I was in and out of consciousness barely able to remember anything. Then I was hooked up to morphine in my IV and I became a total dick. Everything and everyone pissed me off. I was too tender to move much. Every movement hurt. Trying to get me on my feet was quite unsuccessful. They told me to give it time to heal. I had grown four inches overnight and had absolutely no sense of balance. My doctors said that was normal. We’d try again later. Then came the complications.

My incision opened up. It is common for people who have taken steroids such as prednisone, as I had a few years before this for asthma complications. Then it got infected with e Coli. My doctor was at my house on New Years Eve checking my bandages. I had medicine pressed and packed into the hole in my back. It was so painful I would grip my bed railings and shake them. I was on so much medicine I regurgitated everything in me, sometimes even the pills and water. I couldn’t eat anything and every food I smelled made me nauseous. I also developed thrush and was on medicine for that, as well. An electrode from the surgery burned a hole in my hairline. I had a scab over the charred flesh. Over the past 14 years some of it has grown back, but I still have a random bald spot where the center of the electrode was. My hair manages to hide it now, because it is no longer such a big patch, but at the time, it was a scab that began to peel into my hair.

A few months passed and things got better. I could have died from my infection, but I didn’t. Yet, I still couldn’t walk. Now that I was on the mend, Pam started pushing me to get up. I went through Physical Therapy but still couldn’t stand without someone holding me up. Pam pushed me into water therapy. It helped my arms, but again I could not gain enough strength to stand. I developed a massive phobia of falling because in an effort to get me to stand, I was dropped more than once. It got so bad I would cry, scream and have a breakdown any time anyone tried to make me stand because my legs felt weak and wobbly and I felt like I could not do it. My body would be worked into exhaustion. Still, standing on my own, was out of my grasp.

To encourage me to learn to stand and walk again, while I was at MDA camp, Pam gave back my Hoyer lift to the medical company from which we were renting it. I came home to the new régime of getting me on my feet. I was required to wiggle myself in and out of bed, because I could not lift myself into it. Some nights it took over an hour for me to do this. It was physically taxing to wiggle, but asking for help into bed was not an option.

I received my first wheelchair (I had been using an electric scooter until then) in September 2007. My doctor requested I get one as it gave me much better back and neck support than my scooter did. Honestly, going into a wheelchair, for me, was a relief. Those last few years walking had become hard. I was always falling and hurting myself. I had sprained my ankles and feet more times than I could count. I missed out on a lot of social opportunities because I became too tired from walking. A wheelchair meant I could finally rest and it gave me independence to get around and participate with my peers. Some of my greatest memories are racing around my High School with my best friend, Ron, in our wheelchairs.

I did not feel like I was giving up. I felt like I was regaining my freedom and blossoming into something new…kind of like a caterpillar blossoms into a brand new butterfly. Not everyone felt that way. Parents put way too much emphasis on wanting their kids to walk and less on all the things their children still CAN do, in spite of their disability. They do not realize the massive pressure they put on their children with their expectations, while they should be encouraging their kids to follow their dreams and finding alternative methods and ways for them to attain their greatest goals.

I, personally, have begun to accept the fact that the path my disability took is not under my control. Still that day, 14 years ago, nine days before my sweet 16th birthday, will never be forgotten. As much as I am grateful for my wheelchair, it is a day like today where I feel glum about having to use it. I feel frustrated I cannot just hop up and take myself to the bathroom or slide into the shower for a hot bath. I am sad I have to have Ash lift my arms up to give her a hug. I want to curl up on the couch with her and watch a movie, but I can’t. This is the day that reminds me of all my can’ts.

Two years ago, to add to the sadness of the day, my grandmother Melba Louise Ogle Ryan, a woman we called Noonie, who baked me birthday cakes, shared salads with me and chased me around to spank my butt with a wooden spoon when I was bad (in the most loving of ways) passed away. When she went into hospice earlier in December I just knew she’d die on the 17th. As much as I miss my abilty to walk, I also miss my Noonie.

Well, the day is almost over, and tomorrow I will wake up happier. Gone will be the glum and I will return to doing everything and anything I can in my life, as a blogger/writer/editor, and on my career path for school. But…for one day I simply cannot forget…14 years alive…14 years unable to stand/walk…14 years of mixed emotions.

Technorati Tags: wheelchair, walking, Spinal Muscular Atrophy, memories, family, grandmother, death, sadness, loss

From kindergarten through third grade, people used to call me duck, because I had a limp that resembled a duck’s waddle. This is because I have a muscle disease, Spinal Muscular Atrophy. I remember walking down the hall and having entire classes of kids quack at me as I passed them. It was mortifying and yet, I held my head high and tried desperately to ignore them. Really, I wanted to just curl up into a ball and cry. I think that is why I had such a problem with being a duck in our kindergarten play. It reminded me of that horrible name I was called. At the time, I told my parents I wished I was dead, because life would be better dead then being teased so horribly.

In fifth grade, I was made fun of for the way I dressed (I had no choice in picking out my clothes) and that’s when they started calling me fat. I used to be very skinny, but I was put on steroids for my asthma. I doubled my weight in six months, and that’s when my classmates called me porker, fatty, piggy, and made me self-conscious about every piece of food I put in my mouth. Some kids told me to stop eating so I wouldn’t get any fatter. Explaining I was fat from medicine didn’t help. It made it worse, because then I became a “liar” to boot.

Really, I was a little chubby, but to them I was fat. To make matters worse, my mother forced me to get perm after perm, making my silky, straight hair look like I had the head of a poodle. She dressed me in sweat or cotton pants and could never do anything with my poodle hair. I started wearing glasses that year and she made me get ugly plastic ones. I tried to find the smallest pair possible…but…they were pink.

I was also tripped on the bus and often had to crawl off of it, because I didn’t have the strength to get back up. The bus driver didn’t seem to care other than to call us unruly kids. The funny thing is that the primary target was my next door neighbor, who enjoyed taunting me on and off the bus. I couldn’t get away from that kid until his family moved, a few years later.

In sixth grade, a kid hopped on the back of my scooter at recess, held down my forward button and tried to ram me into some playground equipment to “flip me over”. I couldn’t get the kid off the back of my scooter or to let go of my controller button, and if I had not thought fast enough to switch the on/off switch and get my scooter to stop I would have rammed into it and injured myself badly. I remember being shaken up and very scared. My heart was pounding in my chest, and all the kid got was a yelling at from the playground monitors.

In seventh grade, a male student tripped me and the teacher walked out of class, leaving me on the floor next to my motorized scooter, unable to get up. I missed my bus home and the janitor found me a half-hour later, crying on the floor. He had to pick me up and put me in my scooter.

I was constantly teased for being fat, for my family being the way they were, for being disabled. I was told I should just kill myself because I was too worthless to stay alive. I was told I’d be nothing in life, and to forget my dreams, because I was pathetic. I was told I was a bad person and I must have done something bad for “God” to make me suffer in a wheelchair.

My mom got involved to cause trouble and get pity for herself, which just caused more trouble for me. I was teased because I couldn’t stand up for myself, for being a tattle tale (even when often others told her what was going on and not me), for being a whiner.

In tenth grade, after returning to school from a six months absence due to severe spinal surgery, as I wheeled around in a neck to waist back brace, I came upon an elevator full of dead mice. This was my elevator. The one I used to get up and down floors. The senior prank had gone horribly wrong when their live mice they wanted to let loose around the school died, so one of the guys wanted to prank “the kid in the wheelchair.” They poured the dead mice into the elevator hoping I would run them over and crush their bodies. As I was backing into the elevator unable to see down, a kid stopped me because he felt bad. He told me to get out of the elevator and got the janitor to clean it up. I was stuck upstairs while they did. I was a mess. Who would do this to me and why?

The school nurse would not let me go home even though I was a wreck. She told me I was fine and to deal with it. A disability mediator was called in and my doctor wouldn’t let me go to school. None of the people responsible ever got punished for this and the disability mediator made me return to school giving in to false promises by the school. I was let down, yet again.

I was not given an IEP almost every year I was in school. That is against the law. I wasn’t allowed a personal assistant to help me take off my coat. If my friend’s PA didn’t help me I often wore my coat all day. I never could get my books without help. If it was not for a girl named Rachel or a girl named Tiffany I would never have eaten lunch or got out to my bus to go home. I had to ask my classmates for help which was downright embarrassing. This led to even more resentment by my peers.

My home life was not any better. I was being abused at home, and so when I was 19, I wanted to die and I wanted to kill myself. Luckily, I found a way to save myself, but I still remember how horrible the bullies in my life made me feel. While others were out at homecoming, I was home alone wishing to die. While others were at the prom, I was thinking of ways to kill myself. While my peers were enjoying their teen years, with friends, I was dealing with so much other crap – issues of gender, the thought of dying from surgery, family abuse, that I have no real happy memories of this time.

I really hate to hear kids suffering in ways I can understand, to the point of feeling they deserve to die. How can people be so cruel? Bullying is a form of TORTURE. How can another person torture someone else? I just cannot comprehend how these people think.

This is what a bully does to a person. Were you a bully and if so are you sorry? My pain is not unique. My story is not unique. I am just one who managed to survive. I have moved past this, and yet, for every lucky one like me, there is another child who isn’t so lucky…a child who does not make it.

Over 85% of disabled kids are bullied in school. LGBT youth are four times as likely to commit suicide than their heterosexual peers. These are staggering statistics. Now what are we going to do to stop this epidemic?

Technorati Tags: bully, LGBT, harassment, bullying, transgender, disabled, disability, fat, school, high school, tease, pick on, mean, suicide, teen, teen suicide, youth

I have decided to be a blunt asshole on this issue. I have tried to be nice. I have tried to reason with people. I have tried to be informed, articulate, thoughtful and thought provoking to no avail. No matter how I approach this subject there will always be some who believe those of us with MD who do not kowtow to Jerry Lewis are just a bunch of ungrateful, whiny bitches. Believe what you want. None of you bemoaning about us have any idea what it is like to have MD. Many are parents of young children and MDA is still catering to these children. Therefore, they do not see the side of MDA those of us who have surpassed Jerry’s expectations on living see on a daily basis.

First, let’s get some perspective. I was diagnosed with SMA in 1985 at Toledo Hospital by Dr. Edward Orecchio who was working through the Toledo MDA. I loved Dr. O. I still admire him and Dr. Richard Munk, a man who saved my life when I was 15 years old by performing life-saving spinal fusion surgery on me. These men loved and cared about their patients. This kind of devotion by doctors is not the same for every clinic (i.e. the Flint clinic I visited where I was treated like a lab rat, expected to do tricks, show off my physical dysfunctions and spoken over as though I was not in the room nor capable of speech).

At the time of my diagnosis I had no insurance. My dad was laid off and MDA picked up the cost of the medical services including my muscle biopsy. I am grateful to MDA for that. MDA claims they pay for clinic for those with MD, but lets be honest. They pay for clinic for those without insurance. Truthfully, I do not mind having my insurance pay for doctor’s visits, since I have insurance. What I care about is MDA’s misrepresentation of what they pay for when it comes to clinic. Why can’t MDA just admit they only pay for clinic when the person does not have insurance as opposed to insinuating they always pay for clinic visits?

Second, MDA was a lot different when I was growing up. Oh, MDA…MDA…let me count the ways (in which your organization was different):

1. When MDA said they bought wheelchairs for those with MD, they really did – Last year, all of us with forms of MD received letters saying that MDA would no longer pay for equipment including wheelchairs, braces, walkers, machines needed for breathing and feeding, etc. This was paramount to what MDA did for patients with one of the 40+ diseases covered by MDA and it is a travesty they no longer pay for equipment.

2. Adults were included. Adults were an integral part of telethon, summer camp, support groups, etc. When I was a kid I learned I could have a future and go to college thanks to the adults with MD, whom I was able to interact with at camp, telethon and MDA events. Adults were a part of the MDA family. As I aged, adults were first kicked out of camp (age was dropped to 6 to 21). Then last year camp age was dropped from that to 6 to 17. The age just keeps getting lower and lower. Then, adults were no longer welcome at telethon. A poster child friend of mine was flat out told not to come to the television station because they were moving in a new, younger direction. Adults are treated horribly by MDA. I was ignored at one of my last clinic visits as multiple children were ushered in before me, despite my having a time limit on when my ride would arrive. Then, I was yelled at when my ride did show up and the doctor barely had a chance to see me. This is probably because Jerry says we’re all going to die and those of us who live are symbols of his great white lie.

3. MDA offered support. We were a family. Parents had other parents to lean on and us kids all hung out together whenever we could. Telethon was a time to meet up with friends we had not seen from camp. With some friends dying and parents becoming less involved in MDA, that family atmosphere has all but disappeared. It has not helped that MDA continues to cut offices. Toledo, Flint and Dayton are just three MDA offices I know that have been cut. Nobody seems to realize that firing Lori, a woman who worked for MDA for almost 30 years, was just as devastating to those of us with MD. Lori was a part of the MDA family, and her loss, due to the Toledo clinic shutting down, is felt by all of us who knew her.

Further, it does not help that MDA has recently cut out paying for those of us without wheelchair vans to get to clinic. If you have no transportation, well then I guess you can’t go to clinic. MDA used to pay to ensure those of us with MD could go see doctors who supposedly have specializations with these neuromuscular diseases. Not anymore. I tried to schedule an appointment to Detroit (the last place I went to clinic – Farmington Hills, actually) and was told I had to find my own way there, which was impossible to do.

Third, Jerry Lewis is a jerk. He is. The hateful things he has said about those with disabilities and gay people is just ridiculous. No amount of fundraising can make up for hate speech. Jerry is merely the figurehead for MDA, anyway. I commend the volunteers, often unseen, who do all the hard work for MDA. If Jerry said the things he has said about your children or yourself it would be a different story. I will NEVER be grateful to a man who has:

-kept his career going thanks to this telethon
-calls people with MD half-persons who can only live half-lives, cripples, less than whole, human waterbeds, etc.
-has said he would kill himself if he was diagnosed with MD
-has said that those of us with MD who do not want pity should stay in our houses
-claims we are all going to die and there is no other option for our futures
-calls people fags on the telethon (his producer’s son)
-says we are trapped in the “steel imprisonment” of our wheelchairs
-uses images of pity to raise money and evoke sympathy for the little “cripples” he features on the telethon

Honestly, if anyone else said these kinds of things they would be crucified. What vile, hateful things. To all of the parents out there saying Jerry is not bad, who have kids with MD, he called your kid a cripple. He said your child is not whole merely because they have a muscle disease. He says your children live half lives. From my experience of working with and hanging out with kids with MD, let me say, these are some of the most resilient, brilliant-minded children I have met. They are not HALF persons. They are whole, vibrant, caring, loving, intelligent, thoughtful kids living their lives to the fullest, despite facing physical challenges. That sounds like well-rounded, whole, functioning kids to me!

You would not let any other person say such vile things to your children, so why is it okay for Jerry to do so? Are you so desperate for a cure for your child that you are willing to let someone degrade your child just because they claim to be looking for a cure? I have news for you. There are plenty of other organizations who are funding research for these diseases, like Parent Project Muscular Dystrophy, Families of SMA, and Cure Duchenne. Their research is not being done at the expense of your children and many of these organizations seem to be making greater strides than MDA is, in the research arena.

MDA once was an organization that cared as much for the living patients with MD as it did finding a cure for future generations. Now, MDA has all but forgotten about those of us already living with the disease. For those with young children, MDA is giving you attention because it is profitable. Little kids are cute. I should know. I was downright gorgeous and MDA knew that. They exploited my skills in public speaking and cuteness. Then, when I became an adult, facing the realities of being in a wheelchair, and really, truly needed the support MDA once offered, I was cast out for newer, younger, cuter models. I am not bitter about this. It just hurts to see them do the same thing to other families and other children, who will soon feel the sting of rejection I once felt by MDA, once I became an adult.

I cannot support this current organization nor anything it stands for, and if you are too blind to the reasons why I cannot do so, then maybe you need to re-read this article, and really let all of the things MDA is doing (or not) and all of the harmful things Jerry Lewis has said really sink in. If you were in my shoes, where would you stand?

Technorati Tags: MDA, Muscular Dystrophy Association, Pity, Jerry Lewis, Labor Day Telethon, MDA Telethon, Cripples, Half-Person, Wheelchair, Muscular Dystrophy

I talk to many parents who have children with disabilities. They are on my Facebook and my Twitter. I hope that through me they realize that their children may have the potential for productive adult lives. As such, I often receive messages, good and bad, about groups, fan pages, and interesting individuals pertaining to the disability community. None have shocked me quite like a post on a mother’s Facebook wall about a group on FB called KEEP DOWN SYNDROME SUFFERERS OUT OF SOCIETY.

The title alone was appalling to me, but I figured it was just a group of ignorant kids fooling around on Facebook. Going to the group was even more insulting. The group description included tips on how those with Down Syndrome should either be locked away or murdered at birth. The group had many people joining to tell the founders and group supporters how sick they were (fruitless, I believe), but there were also many, disgusting posts. Some of them discussed hitting children with Down Syndrome in the face to try to get the “Retard Look” to go away. One was a picture of a mauled, aborted child, with the caption, “This should be all people with Down Syndrome.”

Upon further inspection, I was surprised to learn that not only were teenagers partaking in such vile behavior (parental supervision, anyone?), but 20 and 30-somethings were joining in the hullabaloo, too. Luckily, Facebook has an option that lets members of the site report groups that revolve around hate speech, or disparage a group or individual. Pictures, discussion posts, and wall posts can be reported, too. After making my rounds reporting the group and certain, offensive posts and pictures, I wrote this message on my FB profile:

Mind you, I had been thinking about writing a post like this for a while.

As you can see, I didn’t explain anything about the group or ask anyone else to report the group. I did go on Twitter and urge my friends there to report the group and some of them did. After a friend responded to my FB post, I explained why I was upset, as it pertains to disabilities. This was my reply:

Well, it has been something I’ve been thinking about saying on FB for a while. I think people with disabilities are often looked past, looked over, spoken over, deemed unfit, etc.

What those people doing this don’t realize is ALS could strike them tomorrow, MS could put them in a wheelchair, they could get in an accident at any time. Then, everyone will start doing what they did to others – ignore them, look past them, underestimate them, etc.

Honestly, the final breaking point for me was the creation of a group telling people on FB to exclude people with Down Syndrome from society. The group said to either lock them up or just kill ‘these morons’ at birth. This ignorance, that it even exists, is beyond disappointing. It’s disgusting. I’ve reported the group to FB, and so have many others. Let’s just hope FB doesn’t pull the free speech crap we often hear….

There is freedom of speech and their is hate speech. Hate speech should never be tolerated.

This turned my post about disabilities into a massive debate about free speech, and the right of the group to say what they want. My entire message of, “you reap what you sow,” and “treat others as you wish them to treat you,” was completely lost in this debate. For this blog post, that is neither here nor there. It’s merely something worth noting. What is important, is understanding why I feel there is a difference between Free Speech and Hate Speech.

Yourdictionary.com describes the legal definition of Hate Speech as:

Speech not protected by the First Amendment, because it is intended to foster hatred against individuals or groups based on race, religion, gender, sexual preference, place of national origin, or other improper classification.

Similarly, Dictionary.com defines Hate Speech as:

–noun
speech that attacks a person or group on the basis of race, religion, gender, or sexual orientation.

In the First Amendment of the U.S. Constitution, we are guaranteed the right to Free Speech. We are also guaranteed access as Americans to life, liberty, and the pursuit of happiness.

With these definitions in mind, I feel that the aformentioned group was not created to exercise the right to free speech. If the legal definition of Hate Speech holds true, their speech is not protected by the Bill of Rights because it is not Free Speech. It is disparaging, degrading, and hateful to human beings who deserve the same rights guaranteed to them by the Constitution regardless of ability or lack thereof.

Additionally, their proposed solution for getting rid of the Down Syndrome population is to kill them all so they can no longer pass on their defective genes or go back to something outlawed against racial minorities nearly 60 years ago – separation, isolation, segregation. This goes against human beings’ with Down Syndrome’s right to Life, but also Liberty and the Pursuit of Happiness. There is no liberty locked away somewhere and there is no way to pursue any potential happiness these people could have if they were segregated from the mainstream population.

This goes back to the original point of my post. These hateful individuals who created this group can’t get Down Syndrome themselves, but they could have a child with it, one day. They could end up being disabled in some other way and see just how hurtful remarks can be when aimed at them. Karma is a bitch. We as humans often realize this too late in our lives.

In the end, the group was removed, though I don’t think I swayed any opinions in the debate. I leave you with these final thoughts I included on FB.

This is more than just mere ignorance. They are posting pictures of dead, mutilated babies and saying this should be all people with Downs. They are saying they’d like to physically attack (punch) people with Downs. They claim they wish to incite violence against a group of individuals with a specific disability and that goes beyond freedom of speech. You may not get it, but allowing such ignorance to congregate and spread on such a forum leads to misinformation and more ignorance….

People will disabilities are still treated like second class citizens. The disability community is, by far, the most discriminated against minority group. It’s also the biggest minority group and the only one any individual in the world can become a part of at any point in their life. The reason for this is because so many people take such a laissez faire attitude when it comes to defending the inalienable rights (to life, liberty and the pursuit of happiness) of people with disabilities. The right to life…not death regardless of disability. So, it’s okay to say they want to take away someone’s human right because they deem the person inferior?

You pointed out the exact problem with why Hitler was not stopped early on. The U.S. had an attitude of, “Hey it isn’t us.” So, we chose to do nothing. We only ended up getting involved because of Pearl Harbor. We had to be personally attacked before we would stand up to Hitler, and even then, it wasn’t because we actually wanted to get involved and save the Jews.

It is the strength in numbers idea. If you have one or two people who feel a certain way about an idea, they usually keep their mouths shut. Once they grow, then the ideas spread and then it inevitably leads to actions. When Hitler was beginning, not everyone believed the Jews needed to be exterminated. As the Nazi party grew, it soon became better to be a part of the party than not, and adopt such heinous beliefs….

The idea is to try to stop the violence before it begins, to educate the public about these types of groups, and to inevitably protect the minority from the majority. If we tolerate such hate groups, allowing them to spout their rhetoric, in a public forum that allows people like me to COMPLAIN and REPORT them specifically for attacking a select group of individuals, then essentially we are ignoring a problem that could grow into something much bigger.

Facebook obviously feels that certain groups of people or specific individuals should NOT be attacked in any of their forums because they have a report button option specifically for this purpose whether their terms of service espouses such notions clearly or not. It’s one thing to say you hate someone or something. It is another to talk about how you punch children with Down’s Syndrome in their faces or how you want to kill them.

I didn’t ask you or anyone else to report this group. In fact, I didn’t even include a link to said group. I think my entire point in my original post was lost. The original message I was trying to get at was that any person in this world can become disabled tomorrow. So sticks and stones. If you treat people with disabilities like crap and then you become disabled yourself, don’t be surprised when you are treated like crap, too.

Essentially, the goal is to realize that people with disabilities are no different than any other human in the most essential of ways. It is foolish to overlook someone for a wheelchair or for having a low IQ. This person may possess gifts and talents you’d only know existed had you taken the time to give said person a chance. The sad truth is, most people don’t give those with disabilities chances and miss out on the greatness these people have to offer.

I was merely pointing out that this group possesses such attitudes that seek to limit those with a specific disability. This type of ignorance spreads and is part of why people with disabilities are still treated so poorly in mainstream society. I have been educating groups of people on disabilities and all that those of us with disabilities can accomplish despite the limitations society has tried to thrust upon us since I was ten years old. Perhaps I am a bit passionate in my quest to finding a sense of equality for those of us with disabilities, but you’d be hard pressed to find any advocate who is not passionate about such a cause they believe in.

I will continue to stand up for what I believe in, even if it isn’t considered the right way to do things or too emotive. I believe this group did attack a specific group. So, I took the action FB allowed me to take against said group, by reporting them.

I leave you all with this thought:

“First they came for the communists, and I did not speak out—because I was not a communist;
Then they came for the trade unionists, and I did not speak out—because I was not a trade unionist;
Then they came for the Jews, and I did not speak out—because I was not a Jew;
Then they came for me—and there was no one left to speak out for me.”

Technorati Tags: Facebook, Hate Speech, Freedom of Speech, First Amedment, Bill of Rights, Facebook Group, Down Syndrome, Disability

In 2008, Charity Navigator reported him as making $402,732. That is up a few thousand dollars from the last time I reported on MDA (I believe he was making around $399K). Just to put that into perspective, that would buy at least 20 of the high tech kind of power wheelchairs I currently have. That would buy at least 400 pairs of AFOs/Leg Braces, or between 100 and 200 manual wheelchairs. Instead, it went into this greedy CEO’s pocket.

In 2009, Flint, Michigan was just one of the places that saw their MDA office close. It is not new that the economy in Mid-Michigan has been generally poor. However, records for patients are still sealed up in a Flint office. To get access to them, they must contact the Saginaw office, and arrange for the files to be accessed. I am just going to say my friend is having a LOT of trouble getting his files from this office. With nobody working in Flint, accessing these files is near impossible.

The office near and dear to my heart in Toledo, Ohio also shut down at the end of 2009. This is the MDA that diagnosed me in 1985. I was their poster child/goodwill ambassador before being the State of Ohio representative, back in the 90s. Northwest Ohio MDA was like my family. I had worked with the office staff on hundreds of fundraisers. I used to visit the office often in the summer. I saw some of them at camp and at clinic every year of my childhood.

It saddens me to think that people like Lori, who was more than a secretary for MDA, and who worked there since I was a child (I am 29, so you do the math), is now unemployed. In the meantime, the money that could play these dedicated, hard working employees is going to good ol’ Gerry and Jerry Lewis’ travel expenses.

To add insult to injury, MDA just sent out a letter (to me and those in Toledo – not sure if it was sent nationally), saying that they will no longer pay for durable medical equipment. That means no more help getting wheelchairs, braces, or other things we need for independence that insurance might not cover completely. It is a sad day in MDA history.

I am of the belief that it is only a matter of time before MDA camp gets sacked. They decided to cancel camp last year, and it seems as though it is considered an unnecessary expense. MDA seems to be going down the tubes, and though they claim to raise money to help those of us with one of the 40+ diseases covered under the “Muscular Dystrophy” umbrella, it seems they really are only helping themselves.

Technorati Tags: MDA, Muscular Dystrophy Association, spending, money, patients, durable medical equipment, CEO, Gerald Weinberg