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

All of this fear and uncertainty and hope floods through me at the thought of a cure. What does this mean for those of us with SMA? What will a cure do for us? Will it reverse the muscle weakness? Will it make our muscles stronger? Does this mean some of us will walk? What will a cure do? That uncertainty is nearly as scary of the prospect of being promised a cure that never comes.

Don’t get me wrong. I am not a whiner. I don’t want to say I don’t care about being in a wheelchair, because if I had the choice of wheeling or walking, I’d choose walking. But…I have accepted my disability. I don’t believe in whining about the fact I cannot walk. What a waste of time. I have no complaints. I attempt to adapt and improvise to whatever is thrown at me.

The uncertainty is what I am the most worried about. Nobody can seem to tell me what a cure means. Does it mean I’ll be putting my life on hold to go through PT and strength training? Does it mean I can even recover any muscle strength? Some have told me I’m hopeless. At 28, I’ve had too many of the effects of SMA wear and tear on my body, and any cure is too late in the coming. Is it? Would I be better served if a cure had come a decade earlier?

I guess the scariest part is the what ifs. I’d love to see the youngest generations benefit from a cure. I’d also like to know if I should maintain hope, or if I should just give up and realize this is as good as it gets, and living an adapted life, though inconvenient, is the best way to live. Anyone have any ideas, of what a cure means for those of us with SMA? If you do, I’d love to know.

Technorati Tags: SMA, Spinal Muscular Atrophy, Cure, Cure SMA, Type III, uncertainty, Muscular Dystrophy

Hoyer Lifts get people in wheelchairs in and out of bed and to their wheelchair. They are a safe way to lift a person with a physical disability. I once did unsafe transfers and that is how I fell and fractured my tibia, which created all kinds of other health problems. Now, I would be lost without my Hoyer lift.

My old Hoyer lift is manual. The pump gets stuck. The knob gets stuck, shooting me down towards the ground quickly and scarily. It’s starting to creak and groan. It’s over 5 years old, so it’s about time for a new one. The best, recommended option by my doctors is an electric Hoyer. My current insurance will not pay for the electrical part of the Hoyer. Since an electrical Hoyer is safer and the buttons won’t stick like the manual (a safety risk), we decided to hold a fundraiser to make money for the Hoyer.

I couldn’t just raise money for myself though. I decided to give 15% of the proceeds to a charity run by my friend, Danny Brown. 12for12k holds a charity event per month. 12 charities are chosen and the goal is to raise 12K ($12,000). This months charity was Hospice of Peel. My grandmother, Melba Ryan died in Hospice of Northwest Ohio on 12/17/08. Hospice is such a wonderful organization. They were amazing to my grandfather who lost his partner and wife of 69 years (4 of those courting).

So, I spent the whole weekend with Ashtyn on Twitter and Facebook. We posted and posted to raise money for the Hoyer and Hospice. Something happened today though. I was accused of running a scam and begging for money. It wasn’t by a stranger. It was by someone I’ve known my whole life.

I didn’t feel as bad for myself as I did for Danny and the cause I was raising money for. At the hint of accusations, our donations number dwindled and stopped. I then decided I’d give it all to Danny. It was drama that followed me around that had caused this shift in donations, but Danny would hear none of it. Like a prizefighter, he jumped to my defense. There was no proof to such allegations, anyway.

So, in stepped SuzeMuse to re-rally the troops and 30 minutes later, the donations started to pour in again. Everyone was so very supportive. People don’t like sabotage, especially when its clear the person having the fundraiser is only trying to do some good. With it down to the wire, we made our goal for the Hoyer and then some!

Well the first thing I did was make an announcement. I wouldn’t just give the 15% to Hospice of Peel. I would give $300. That left a little over $500 for my Hoyer. We could pay the rest out of pocket. Yes, we make enough to feed our family, clothe ourselves, and take care of our basic needs (a 4 person family). We are incredibly LUCKY and grateful in this respect.

That being said, when you are in a wheelchair you have MANY more expenses. Insurance doesn’t always pay for these expenses. In fact, some things no insurance will pay for (like van lifts) and government assistance is usually only available if you are under 18.

I am so grateful my friends were willing to help plan this fundraiser and help see it through. I HAPPILY donated $300 to Hospice of Peel (if you don’t believe me email Danny Brown through the 12for12k link up above — he will tell you he already received payment). I donated it in honor and in the memory of Melba Ryan. I want my grandmother to get the credit for this one. Noonie, I miss and love you. It is you who inspire me. It is you who I think of every day. It is you who I know would want me to donate to Hospice.

Thank you Noonie. The world was a better place with you in it, and now that you are gone, we will never forget.

Technorati Tags: Noonie, Danny Brown, Melba Ryan, donate, Hospice of People, In Memory, Melba Louise Ogle, Hoyer Lift, Thank you, donation, charity

Check it out!

It’s not wheelchair accessible…YET!

It’s a 2008 Chevy Uplander. It is the Uplander LT with Extended Wheelbase and FWD. It has a CD Player and a DVD Player. We got a great deal on it!

We’re hosting a fundraiser this weekend to make money to make it accessible on the website AHouse4Dom.

I’m so happy though. I’m so glad we were finally able to get a van!

Technorati Tags: Van, Wheelchair Accessible, raise money, new vehicle, accessible van, Chevy Uplander

I might not be explaining myself as clearly as I should, so let me give you an example. I am not exactly getting the point of civil disobedience in this day and age. The same people who are telling me that the world should be civilized enough to keep serial killers and pedophiles in prison (more on this later), as opposed to the death penalty, feel it is okay to go out and cause civil disobedience. I’m not sure I understand what is so civilized about this.

I can see why civil disobedience was big in the 60s. Everyone was out burning bras, chaining themselves to buildings, and causing a ruckus with the police. They were also on a lot of Acid, Weed, and other drugs. There really was no civility in the time of free love, and perhaps our nation has become more conservative and conventional, but I don’t see how civil disobedience, in this day and age, is going to make anyone’s perception of a specific group positive. In fact, because we live in a more conservative nation, I feel the perception is, more often than not, negative.

Going even further, let me explain what got me thinking about this. ADAPT hosted/is hosting a week of events in Washington D.C. to protest Obama’s slowness in getting the Community Choice Act (CCA) through Congress and on his desk. Granted, Obama did promise those of us in the disabled community this bill, and he has been sluggish in getting things going for the CCA, but he has one heck of a mess to clean up in this nation and a lot of other promises to uphold. It is going to take time and ADAPT is demanding answers now.

I’m not saying I’m happy with Obama. I voted for Obama partly because I felt McCain was just more Bush and partly because he was the only one who claimed he supported the political actions I support. Like everyone else, I’m waiting with baited breath to see if he can get things together. Yes, he’s been in office just over 100 days, but that’s a small amount of time to clean up 8 years of terrible economic practices. I think we all need to use some patience and give him time to figure out what to do, how to do it, and how to implement it. If by the end of four years he hasn’t kept his promises then we’ll know what kind of president, what kind of man, he really is.

I digress. This has only a little to do with perceptions. I am just trying to give my thoughts on the ADAPT actions, so you can see where I am coming from. I’ve been told ADAPT has a long history of civil disobedience action. They used it to pass the ADA (perhaps the most archaic Act in the history of Congress) and to help get public transportation for all (I don’t think enough has been done for this — but that’s just from someone who depends on accessible, public transportation that is unreliable). Perhaps in 1990, civil disobedience worked, but that is almost 20 years ago. Perceptions change.

I have National ADAPT on my Twitter. Throughout the last few days, my twitter stream has been filled with updates on the action. People in wheelchairs (close to 500 — in total) chained themselves to the White House fence. They blocked the entrance to the White House so visitors either had to cancel appointments or go to another entrance on the opposite side of the White House. They crawled up the steps of the Capitol. They were getting arrested, proudly, left and right. For what? Media attention.

Yes, this did get more media attention than the Jerry Lewis protest in California a few months back, but the perceptions of average Americans to this civil disobedience is not positive. On the whole, its negative. Just go look at the comments in newspapers carrying the story or on various Twitter streams of those finding amusement in the action. People don’t get why the disabled populace is breaking the law and getting arrested. In the end, the true reason behind it all, passing the Community Choice Act (a bill necessary and essential to keeping those of us in wheelchairs who require care in our homes and out of nursing homes) is lost in the muddle.

Furthermore, we need the support of the majority. With majority support the CCA has a better chance of being passed. The perceptions of the majority matter because they help this essential bill come to fruition. The majority needs to help us email Congress, Obama, and demand the bill pass. If the majority sees us in a negative light, they won’t care if Obama is held accountable for his promise or not, and that, to me is a problem.

People think we’re whiners who just want our way. They believe that we expect too much of Obama. They believe the civil disobedience is pointless. We’re crazy. We’re greedy. We’re selfish for not following proper protocols (the protesters didn’t even file a petition to picket/protest in front of the White House — something they could have done). In fact, the only people who find this amusing or think its great are those who don’t like Obama. Suddenly, Obama hates people with disabilities (according to them). Most of these people are from the Conservative Right.

My thoughts on this are that there are more conventional ways to get the issue in the news. We have a three-section government for a reason. When something doesn’t work out with the Executive Branch, it’s good to appeal to the Legislative Branch. If that doesn’t work we always have the Judicial Branch to fall back upon. How many lawsuits have been filed in the past to bring an issue to the forefront? I wonder why this wasn’t considered before going to the Capitol and crawling up a bunch of steps?

I find it hard to be proud of this action. Yes, I agree something does need to be done, but I don’t agree with the methods employed in order to get action. As far as I know, nothing has been accomplished other than to get the story into the mainstream media, and raise the blood pressures of the majority who don’t agree with 1960s-esque, radical picketing tactics. To me, the entire thing is pointless. Negative attention is worse than no attention, especially when it comes to the support of a bill, such as the CCA.

So, do perceptions matter? Do you think that the disability rights movement should care about what the majority thinks in order to garner their support for the cause? I believe that with the disabled being one of the most discriminated groups in the nation, we do need the majority’s support. Without their understanding of our situation, we won’t get that and civil disobedience is no way to go about changing perceptions, for the better.

Technorati Tags: perceptions, disability, civil disobedience, Community Choice Act, CCA, picket, Congress, Obama, discrimination

I say if Grandma wants to get it on…let her! I don’t want to be watching, but to not allow her the choice is ridiculous. Remember…we will all be elderly one day. This law will one day affect you. Furthermore, I’m 28 years old and in a wheelchair. To ban consensual sexual activity from me just because I’m in a wheelchair is crap!

This brings me to my list. Society, as a whole, has many misconceptions about those of us in wheelchairs, and it all starts with conceptions about those of us in the bedroom. So, let’s get started!

1. People with Physical Disabilities are (or should be) Asexual – I get asked quite often…’so how do you do it?’ The answer is simple. I do it pretty much like everyone else on the planet. I just have to make minor modifications to my set up. For example, I don’t usually have sex on floors, couches, or standing up (no brainer!). I don’t know if people think the wheelchair turns off the sex drive, but it doesn’t. Well…at least not in my case!

I’ve found having a caring, understanding partner helps significantly. We’ve found plenty of ways to get creative and it hasn’t affected our relationship. In fact, I firmly believe it has been a strong part of our relationship since we started dating almost 7 years ago. People with physical disabilities can and do have healthy, loving, caring sexual relationships just like any other person on the planet. Furthermore…I LIKE SEX. Wow! I’m just like 99.9% of 28 year old males on the planet!

2. People with Physical Disabilities Can’t Feel Their Legs – I’m here to let you know this is NOT true. Actually, this depends on the disability. Those who have SCIs (Spinal Cord Injuries) may be paralyzed and are incapable of feeling a touch to their legs, arms, or other parts of their body. There are also other diseases that can paralyze certain parts of the body. However, there are many other disabilities that do not affect tactile stimulation. I happen to have one of them.

Believe me…if I slam my toe into the wall…I feel it! I can feel any touch to me on any part of my body. I’m not exactly sure why people have this misconception. I’m assuming it’s due to the fact that understanding of SCIs seems to be more prominent in the general public then understanding of many other disorders and diseases.

3. If you have a Physical Disability you are also Learning/Mental/Emotionally Disabled – In many cases, this is not true. Yes, some people with physical disabilities also have cognitive and other disabilities, as well. However, you shouldn’t make assumptions about someone in a wheelchair based on the chair alone.

I graduated near the top of my high school class with a 3.9 GPA. I was always in honor classes. I did well in college. I’ll never forget when a relative asked my grandfather (when she heard I had SMA) if I could walk or talk. His response was that I could walk (at that time I could) and talk better than she could! It was priceless. She truly didn’t know what to say. So, don’t just assume. If you want to know…ask!

4. People in Wheelchairs have no Hope of Getting a Job – This myth was in large part perpetuated by Jerry Lewis. He had mentioned how his ‘kids’ had no hope of growing up and maintaining employment, something that is 100% untrue. Of course, these rumors spread.

Yes, some people with disabilities are unable to find employment (just like those who can walk, these days). That being said, many folks in wheelchairs have attended college. They have Bachelor’s degrees, Masters, and PhDs. I know lawyers, teachers, business owners, biologists, computer specialists, and the list goes on. Most of my friends in wheelchairs have forms of Muscular Dystrophy, SCIs, or CP. There is no limit on what someone in a wheelchair is capable of achieving.

5. People in Wheelchairs want to be Inspirations – I don’t believe this is true, in many cases. I know that I don’t want to be an inspiration just for getting out of bed each day. When a person in a wheelchair does something that everyone else in the world does (like taking a shower) then that doesn’t make them inspiring. We’re no heroes. We’re just average individuals who have a different way of getting up than you do.

Yes, there are some people in wheelchairs who are doing great things (think Stephen Hawking – but he was destined to do great things disability or not), and they should be admired. Just don’t admire them because of their disability. Admire them for their accomplishments. In general, don’t admire us because we’re living our lives. We’re really not all that different from you!

Technorati Tags: list post, physical disabilities, misconceptions, wheelchairs, sex

I know that I’ve somewhat neglected this blog, mostly due to illness, but I’m ready to get back in the game. I had to think a little bit about what my goal is with Dominick Evans Online. I’ve been quite random in my postings on here, in the past. First, I wanted to make it clear that I’m not out to inspire people. I hate when people say that about those of us in disabilities. Just by living my every day life I supposedly inspire others. I don’t get why. Sure, I have to do things differently to get up and perform daily tasks, but that’s normalcy for me and I don’t think my getting out of bed, when everyone else in the world does it, should inspire anyone. If I solved the World Hunger crisis, then you could definitely be inspired by me, but c’mon! I don’t do anything necessarily spectacular!

Second, I didn’t want to make my elevator pitch too preachy. I don’t like being preached at, so I didn’t want to preach at anyone else. This is really a place for sharing my thoughts, my passion, and my zest for life and all its intricacies. So, I sat down (haha) and proceeded to write a short tagline pitch and then an expanded version. Here is what I came up with:

The Dominick Evans Online Tagline

Explore the Life and Thoughts of a Transgendered Man in a Wheelchair at Dominick Evans Online

The Dominick Evans Elevator Pitch

Dominick Evans Online is my personal blog, which I use to express my thoughts, share my passions and enlighten those who have no comprehension of what it’s like to be transgendered and in a wheelchair. A bit random from time to time, the primary focus of this blog is to show the world that just because I face different challenges life throws at me doesn’t mean I don’t still think, feel and act like anyone else. Using humor, political thought and zeal I attempt to take readers through a day in the life of Dominick Evans.

So, what do you think about my tagline and my elevator pitch. Does it accurately describe the kind of things I’ve posted on here at Dominick Evans Online? I hope it has!

Let me know what you think. I’d love to hear your thoughts!

Technorati Tags: Dominick Evans, Online, Transgendered, Wheelchair, Disability, Man, Personal Blog, Thoughts

1. I’m grateful that the MDA no longer pays for my clinic visits. Instead, they charge my insurance exorbitant amounts of money. They advertise on the telethon that clinic is part of where the money goes, but no longer do they pay. I’m grateful because I no longer attend clinic. I have found my own team of specialists to help deal with my medical needs, which are a part of having the type of MD I do.

2. I’m grateful that MDA has continued to drop the age for camp. Originally, everyone could attend camp regardless of age. In the 90s, MDA shut out adults. In 2009, they will change the age limit from 6-21 to 6-17, to save money. Despite camp being one of the only vacations adults with MD received and despite younger campers learning from adult campers, giving these young campers hope they could have a future (despite many believing they are going to die young, thanks to what Jerry Lewis has said about them), I’m grateful that I can no longer attend camp because I didn’t like the food.

3. I’m grateful that MDA doesn’t buy my equipment. Who knows where they would have scrimped and saved if they were the ones paying for my wheelchair? Instead, my insurance covers 100% of the cost. My insurance buys my Hoyer lift, my bathroom aids, my respiratory equipment and pretty much everything else I need. MDA says they buy equipment, in order to get people to donate. What they don’t say is it’s a relatively small amount ($5000 – not even 1/4 the price of my wheelchair) and it’s given out every 8-10 years. Truthfully, they only give it if your insurance won’t pay and even then, you have to beg.

4. I’m grateful that when my insurance bought me a lemon wheelchair, the MDA shared my private medical information with someone they shouldn’t. That is against the law, but after writing to National MDA to point this out, they tried to give me hush money for a new wheelchair, so I wouldn’t push the issue too much. By then, it was too late and the lemon wheelchair had ruined my legs, causing me to spend considerable amounts of time in bed. Nice to know MDA only is there when they are backed into a corner.

5. I’m grateful that MDA is going in a new direction. Having told many of my adult friends they are no longer welcome at the telethon, because they are too old just shows how much they care about adults with MD. We all know kids invoke more pity anyway and they make more money. Besides, we’re all just proof that Jerry was wrong when he said all of us would die before we became adults.

6. I’m grateful the MDA pimped me out for profit. I served as Goodwill Ambassador for my local area and state. Then I volunteered with my family tirelessly attending thousands of events and raising thousands of dollars. It made it sting just a little bit more when MDA turned their backs on me, once I became an adult and was no longer profitable to them. However, it taught me the true meaning and purpose of the organization. For that, I am grateful.

7. I’m grateful that MDA has kept Jerry Lewis on as its spokesperson. The world needs another bigot dictating how we should treat people in wheelchairs. Everyone knows those of us in wheelchairs deserve pity and we’re half person cripples who should just shoot ourselves in the head and get it over with. That’s what Jerry says we should do, anyway.

8. I’m grateful that Jerry continues to call me his kid. Nevermind the derogatory, paternalistic connotations associated with it. I mean, we are half humans after all and what is more half human than being a kid? I guess you don’t become whole until you are an adult.

9. I’m grateful that the MDA lies on their telethon, not telling people where all their money really goes. They really don’t buy many of us equipment, or if they do, it’s not enough to pay the full amount. They no longer let just anyone with MD go to camp. You aren’t paying for everyone to go to MDA Clinic, because most people have their insurance billed for that. Only a small amount goes to actual research ($15-$20 mil of $200 mil earned last year). There are funds that go to something called “other stuff”. Much of the money actually goes to pay for administrative costs and paying the staff. Almost $400,000 goes to pay the CEO each year and don’t forget it covers the travel costs for Jerry, as he travels in the name of MDA.

10. I’m grateful that MDA has allowed me to meet a group of friends who are fighting for disability equality. Without MDA’s mistreatment towards those of us with Muscular Dystrophy, I don’t think many of us would ever have connected.

[Note: In case you don't get sarcasm -- this article is laced with it]

Technorati Tags: thankful, MDA, Jerry Lewis, Muscular Dystrophy Association, sarcasm, grateful, services, wheelchairs

This is what Mark had to say:

“Get over it. Although you say that you are not defined by the wheelchair that you’re in, your essay betrays you.

Jerry Lewis may get paid by The Muscular Distrophy Assoc. and he may not. Whatever he does get I’d bet that he’s made more for MSA than he’s gotten – so who wins?

I agree with you; Jerry loves to be bathed in the positive glow of “humanitarian” light. I disagree with you when it comes to tuning out the Oscars because they honored him.”

I responded to Mark, but I feel that all my readers should feel welcome to share their thoughts on my blog, positive or negative, so we can discuss how they feel about the articles I write. I am thankful to everyone who reads what I write here at dominickevans.com.

Here is what I had to say to Mark. I’d love to hear his (and your thoughts) to my response. Feel free to leave a comment if you’d like:

Mark,

Thanks for your message!

I am not defined by my wheelchair, though people like Jerry Lewis believe I am. My entire point is that people who do not know anyone with a disability look to Jerry Lewis to see how to treat those of us with disabilities. I am not a half person just because I am in a
wheelchair, but Jerry says I am and people hear that. I don’t wish to be pitied for being in a wheelchair or forced to stay in my house because people pity me, but Jerry says we should be pitied and people listen to him.

I don’t want or need pity. I want people to understand that those of us with Muscular Dystrophy have so many things going for us beyond our wheelchair. When people first see me, they see my wheelchair and make assumptions. Many assume I’m also mentally incompetent.
Many assume I did something bad to get in a wheelchair. Many ask why I’m in a wheelchair and then apologize to me for it. Why apologize? I’m grateful for my wheelchair. It has given me so much freedom and I am who I am, so don’t give me your pity. That’s just the main assumptions they make and they do often pity me, because all they see is how the Jerry Lewis’ of the world treat people in wheelchairs.

It is up to us (those of us in wheelchairs) to change people’s perceptions of us and to stop those like Jerry Lewis by stating that it is wrong for them to degrade us, pity us, and define us by our disabilities.

MDA has cut many services that help those with Muscular Dystrophy and they continue to make more and more money every year. Jerry Lewis doesn’t make a dime of that money himself. He’s merely a figurehead who attached his name to the telethon to keep his
career going. The true humanitarians are the volunteers who spend hours tirelessly working on making the telethon run, on setting up events, on promoting events, on raising the actual money that Jerry claims he raises. They deserve this award…not Jerry.

Dominick

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