The web has made it so those not in the same place as others can experience what is going on, with them. Last night, I had the chance to experience the events of my hometown, as they unfolded on Facebook. I grew up in the small town of Walbridge, Ohio. Pretty much everyone knew everyone there. I went to Lake High School, which served students from Walbridge, Millbury, Moline and Lake Twp, all surrounding areas for the school. My graduating class had less than 200 people in it. Many of us hung out at the local swimming pool. We knew kids in nearly every grade while attending school. It was just a small town community.

Now that I am in Michigan, I feel at a loss. My community needs me and I can’t rush down to help like I want to. My high school was destroyed. Entire chunks of the school are gone. At least five people have died. One was Bailey Bowman. She was just a little kid when I was a young teen at the local swimming pool, Aqua Terrace. She used to play swim games like pom pom with us older kids. Just 20, Bailey died last night on the way to seek shelter at the local police station. Four year old, Hayden Walters and his mother, Mary, died last night. Mary’s husband, Ryan, and her daughter, Maddie are in the hospital. The Lake High School valedictorian lost her father, last night. Today was supposed to have been graduation for Lake High School, but it was postponed. The community is devastated by these losses.

Houses have been decimated, extending from an eight mile path. The Lake Twp police station had it’s roof ripped off and it’s torn apart. Metcalf Field, across from the High School, has a lot of damage. People have lost their entire houses, yet I am too far away to go help. What can I do? I can do only what I am able to do online and through friends who can travel down to Toledo for me.

I am starting a fundraiser to collect money to help those devastated by the Ohio tornadoes. Every penny will be used to buy supplies that will be delivered to those who have lost their homes in this terrible storm. We’ll be getting things like water, food, clothing, toiletries, gift cards, etc.

Please donate and help my hometown out. You can donate via Credit Card, Check or Paypal using the link below:

Technorati Tags: Lake Twp, Tornadoes, Millbury, Destruction, Lake High School, Storm, Tornado, Disaster, Donate, Help, Raise Money, Tragedy

Jerry Lewis is NOT a humanitarian. Have no doubt, he has supported the MDA as their Spokesperson for the last 56 years for his own gain. He does get money from the money you donate. MDA pays for all his travel expenses, and it’s unclear what else they pay for him. Perhaps he receives chunks of the missing millions that MDA has marked as other funds in their publicly released, yearly funding reports. It isn’t exactly clear where these funds go, but it wouldn’t be surprising if some went to Lewis.

MDA has also provided a way for Lewis to stay in the spotlight despite a dying acting career. He may have started out caring about the cause but his actions and comments dating back some 20 years show his true feelings towards those with Muscular Dystrophy. Jerry Lewis doesn’t truly care. To him we are just cripples and half-people who are supposed to be pitied. Those are his words…not mine.

I may be in a wheelchair, but my wheelchair does NOT define me. I’m proud of my wheelchair. I’m grateful for it. Do you know why? I am grateful for it because it helps me get around. It gives me independence. I see it as a device to help me be more independent. It works as my legs. Imagine if someone were to define you by a body part, such as your legs. It wouldn’t be very nice, would it? In fact some people might not even think their legs are a good feature, and therefore would be embarrassed by the definition when they have so many better features and so many more redeemable qualities.

When I list the qualities I have I think about how I love to learn. Some people say I’m quite intelligent. I like to think where I’m lacking in physicality, I made up for it in the brains department. Some people claim I’m funny. I think I’m honest, caring, devoted, helpful, creative, hardworking, dedicated, inspired and several other things. I don’t think…gosh I’m in a wheelchair. If I list that in a profile it’s because I want people to know I blog about being disabled because I want people in wheelchairs to stop being defined by their chairs and start being defined by what they have to offer.

Jerry Lewis does not believe those of us in wheelchairs have anything to offer. At the 1992 telethon he had this to say about those of us with Muscular Dystrophy, particularly those of us who are ADULTS with MD:

My kids cannot go into the workplace. There’s nothing they can do.”

I’m surprised by this because I know many people with MD who have good jobs. I know those with MD who have attended and graduated college. I, myself, attended college. I have at least two friends with MD who have high paying jobs in the computer/IT field. One of them just adopted a baby with his wife and they live in a decent sized house in a good neighborhood. I had another friend who finished a degree in engineering at the same university that I attended. He had Duchenne Muscular Dystrophy and was smarter than any of the other friends I had in wheelchairs or not.

Even Jerry’s former golden boy, Mikey Neufeldt, has a good job working for Harley Davidson, and he serves on the MDA National Task Force. Back when I was a child, Mikey was the national poster child (before they called them Junior Goodwill Ambassadors) for MDA. He was the national face of MDA and he’s accomplished a lot in his lifetime despite having MD. So, I don’t understand how Jerry can get away with saying these things. Of course, that’s not all he’s said. Once…Jerry wrote his opinion on what it’d be like to have Muscular Dystrophy.

“I decided after 41 years of battling this curse that attacks children of all ages, I would put myself in that chair, that steel imprisonment that long has been deemed the dystrophic child’s plight. I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I’m not as fortunate as they are. I’d like to play basketball like normal, healthy, vital and energetic people. I really don’t want the substitute. I just can’t half-do anything. When I sit back and think a little more rationally I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person.”

I am not a half person. I am a WHOLE person. I have a mind. I can think for myself. I am complex. I love. I feel. I hurt. I bleed. I cry. I eat. I sleep. I dream. Just because I don’t walk doesn’t mean I’m not whole. This entire excerpt, which was written I believe in 1992 (or 91? 90?) in Parade magazine is disgusting. Cripples is a word I dislike. It’s the most negative thing you can call a person in a wheelchair, next to calling them a half person.

The definition for crippled in the dictionary is “something flawed or imperfect.” That could describe EVERY person on the planet, but to use it to describe someone on the basis of disability is disrespectful. I’ve never liked that term and you’d think the spokesperson of a national disability organization would have more tact by avoiding using it. Unfortunately, cripple seems to be one of Jerry’s favorite words, next to “fag”, which he has used to describe homosexuals not only on Australian television, but on the MDA telethon last year, when he called the son of one of his cameramen an “illiterate fag.”

Here is another example of him calling those of us with MD cripples. This time he did it on CBS Morning News:

“I’m telling people about a child in trouble! If it’s pity, we’ll get some money. I’m just giving you facts! Pity? [If] you don’t want to be pitied because you’re a cripple in a wheelchair, stay in ya house!”

Why should I stay in my house? I don’t want to be pitied nor do I want to be trapped in my house with no place to go and nothing to do. I want to be seen for what I have to offer, not what I’m not capable of doing with my legs and arms. Does anyone want to be seen for their flaws? As someone with feelings and emotions, I surely don’t.

You can check out the following websites to check out and actually here some of Jerry Lewis’ insensitive comments, IN HIS OWN WORDS!

http://www.ragged-edge-mag.com/extra/jerrylewis052401.htm

http://www.newmobility.com/articleView.cfm?id=391&srch=telethon

http://www.laurahershey.com/?p=53

Here is an online petition you should sign protesting the Academy Award’s and the Humanitarian Award Jerry Lewis is receiving:

http://www.petitiononline.com/jlno2009/petition.html

Of course, there is also his Vanity Fair article, written in 1993, when he was talking about those of us who don’t like his pity-mongering ways. Those of us in wheelchairs who protest his actions for MDA and during the telethon, including a group calling themselves Jerry’s Orphans:

“These people are leeches. They all glommed on to being Jerry-bashers. What did they have before that? They’re disabled people who are so bitter at the bad hand they’ve been dealt that they have to take down somebody who’s doing good. … There’s a million and a half people who depend on what I do!? “I’ve raised one billion three hundred million dollars. …. They want me to stop now? Fuck them. Do it in caps. FUCK THEM.”??

Jerry didn’t raise anything. That’s not HIS money. What about every person on the telethon, all the volunteers around the world who work their asses off for the MDA every day of the year? These are the people I met and worked with when I raised money for MDA. These are the true heroes of the organization, who don’t get paid a cent for their voluntary efforts. All he is is the figurehead, who accepts the checks that these volunteers raise throughout the year. That’s the number that’s tallied on his tote board and he doesn’t raise a cent of it. I bet MDA would make more money with George Clooney or Johnny Depp as their spokesperson and I believe both of them would have the common sense not to call those of us with MD cripples.

Now, I have a long history with MDA. I once supported the organization fully. I spent years raising thousands of dollars for them. I was the Junior Goodwill Ambassador for Northwest Ohio in 1990 & 1991. I was the State of Ohio Junior Goodwill Ambassador in 1992 and 1993. I spent many hours driving around the state to go to MDA events. I went door to door asking for donations. I raised money through my family, sang on the radio for MDA, sang on the Toledo Telethon, appeared on telethons in Columbus, Toledo and Cleveland (twice I was on all three in the same year – which meant no sleep and continuous driving around the state in two days). I attended thousands of events. Then, I became an adult.

The older you are, the less MDA seems to care. I don’t go to the clinic anymore. I see specialists for things I need like respiratory issues and an orthopedic specialist. If I do need something from MDA they never return my phone calls. None of my specialists are associated with MDA. I get my medication from these doctors or my general practitioner.

I am no longer allowed to attend MDA Camp. Originally, all people with MD could attend. It was great having adults around camp, when I was a kid, because they were people I could confide in, learn from and helped me to realize I had a future. The kids of today with MD don’t have that. First, MDA cut the age down to 21 and younger in the 90s, and now it is 17 and under, starting in 2009. More and more, MDA is making cuts, because adults with MD aren’t as profitable. We can’t invoke as much pity, and as Jerry Lewis says, that is what it is all about.

I’ve had friends with MD, who have raised a lot of money, served as Goodwill Ambassadors, and served MDA in other ways, be told not to come back to the telethon. MDA is taking a new direction and these individuals have been told they are too old to attend the telethon and/or MDA events. Before, anyone with MD was welcome and now, there is an age limit. Services for adults are slowly being cut from the budget and even Jerry Lewis refuses to acknowledge the adults with MD. If he does we are “Jerry Kids” and he means it in the most condescending of ways.

After MDA cut me out, after all my years of service, after I learned the truth about MDA, and after I learned the truth about Jerry Lewis I felt like a fool. I had been played and used by MDA. I was pimped out by the MDA as one of their child pity prostitutes. MDA was paid because people pitied me as a kid, not because of how smart I was or all I would eventually accomplish. I was an especially cute kid, too, so I was worth more money. I feel like such a fool now, because of the way MDA used me, and for supporting an organization that allowed Jerry Lewis to continue its antiquated, hate mongering, pity inducing ways.

The money MDA raises isn’t going to all the places it is supposed to go. MDA makes millions of dollars, and at least $372,662 of that goes to the CEO of MDA. In the last five years, that amount has been as high as $399,000. He makes almost as much as the president of the United States, only because Bush raised the payment of the president to $400,000. Not too long ago the president only made $250,000, and the CEO of MDA was already making more than that.

MDA claimed close to $200 million dollars in profits in 2008. It has been reported on various sites that some money is unaccounted for, and between $15-$30 million of that goes to research. There should be much more of those funds going to research, because that’s really all MDA seems to offer anymore, excluding camp, and clinic.

The MDA clinic now bills a person’s insurance, rather than paying for clinic visits like they used to when I was a kid. The fee for this service is exorbitant and is part of why I no longer go to the clinic. I can pay less to one of my specialists, and they won’t bring an entire room full of people in to show them how my tongue wiggles because I have tongue fascillations, treating me like a guinea pig in the process.

At least $4 million goes to something called Other Expenses, but on their Tax Exempt forms, MDA doesn’t say what that is for, and over 15% of what they made last year went to Administrative costs, so this is where your money is going. Once upon a time, MDA once bought us wheelchairs, walkers, and other equipment we needed. Now, that’s limited to $5000 every ten or so years. That’s only 1/4 of the cost of my wheelchair. The CEO’s salary alone could buy around 15, high quality, high tech wheelchairs. That would be money well spent.

My argument here isn’t with the MDA though. It’s with the MDA’s spokesperson, who uses pity to get money for services MDA isn’t paying for like they claim. The worse Jerry gets, the worse MDA gets, and those of us with MD are the ones who are affected the most.

I once loved the MDA, but now I have no respect for the organization, and as long as they continue to allow the hateful, bigoted, Jerry Lewis to represent their organization as they continue to cut the services those of us with MD need, I will continue to speak out about this issue. So, please if you’ve read this, don’t support a man who is no humanitarian. Don’t support a man who has only looked out for himself and his own career. Look out for those of us with Muscular Dystrophy by not supporting the Oscars or Jerry Lewis.

Technorati Tags: Jerry Lewis, Oscars, Humanitarian, Cripple, Hate, Half Person, Pity, Jerry’s Orphans, Jerry’s Kids, Poster Child, Junior Goodwill Ambassador, Academy Award

My grandmother, sweet Noonie, passed away on December 17, 2008. I loved my grandmother very much. We had our differences occasionally, but I never doubted her love for me. I am very close to my grandfather and I feel so connected to him that sometimes I truly believe I can feel the ache in his heart at the loss of his beloved wife of 65 years. They spent 69 glorious years together (if you count dating) and he’s had to endure his first day, Christmas, and New Year without her for almost 70 years. I am just distraught for him, over this.

When I called my Grandfather, to check up on him, my mother, a person I don’t talk to if I can help it, grabbed the phone from one of my cousins. I’m not exactly sure I can remember all she said. I know it was something about me writing about and bad mouthing her on my blog. I know she said she planned to ruin my life by telling the world about the “real me” and I know she did it all in front of my grieving grandfather.

I did the only thing I could do. I ignored her. I didn’t say a word. This was about my grandmother, her death, and my grandfather’s grieving. All I could think about was his hurt and how rotten it was of anyone to do this to HIM. He’s suffering and hurting and that day I hurt badly for him, too. It was a rather selfish thing to do, and I refused to take part in it.

The longer I thought about it, the more irritated I became. First, I scoured dominickevans.com for ANY mention of my family. There was nothing! I saw one mention about how my family was dysfunctional growing up, but I didn’t mention anyone specifically or by name. So, what the heck was she talking about? I checked my Myspace and Facebook, too. Again, no mention.

I don’t talk to anyone that I know she talks to, except my niece and cousins. Sadly, I’d been out of touch with them for quite a few months (except for an occasional hi), so I couldn’t come up with any RECENT mention of my family, at all. By choice, I choose to mention my mother, as little as possible. Still, I was just very confused about what “talking/badmouthing” was going on on my blog.

Second, why go as far as to say you’re going to ruin my life? Seriously! Is this second grade? I’m 28 years old, which makes my mother, 63. Doesn’t she have better things to do with her time then try to ruin my life? I felt like I was on the school playground and I could almost hear the neener neener neener sneer.

I don’t want to talk or badmouth anyone, but I do want to share my life and I want the truth about my past to be known. That is part of why I have a blog. I hope to inspire others, by sharing my life with them and letting them see they aren’t alone. I wasn’t going to mention the incident I listed above, but that has made me realize that perhaps I should be talking about these things, so people can understand my life, the way I see it.

This brings me to my darkest hour. I’ve been dreaming about writing down all of the things I’ve experienced. My dad died in 2001, but he often comes to me in my dreams. He comes to me and tells me I need to share my story. I need to share the truth. I need to tell what I’ve been through, so others, in similar situations, know they’re not alone. I’ve tried to ignore the messages, the calling, and my father’s voice, but I can’t any longer. He just won’t leave me alone!

I should probably mention the things that might “ruin me”. I was an evil child in some ways. I could be mean. I was an awful tease who picked on my brother. I was selfish, but sometimes I needed to be. I could yell and scream with the best of them. I invented insults when people pissed me off, one of my favorites being (when I was little) “you’re ugly and so are your clothes.” I wasn’t always the nicest person, but I’m happy to report I’ve grown out of that.

I don’t want to get into all the particulars, but I have a diary that was written when I was born and when I was little. It stopped being written in around the time I was diagnosed with Spinal Muscular Atrophy. I hope to one day share some of the unusual things said in this diary, because they are quite telling.

I don’t think she (I have trouble referring to her as my mother — because I can’t fathom any mother doing to a child what she did to me) had children to have them. I believe she had children to be loved. She felt a void in her life, and she thought having kids would fill that void with love. Well, when I wasn’t born a lovebug, cuddly, friendly little thing, I feel like I was looked down upon unfavorably.

While I don’t remember being physically abused when I was young, there were instances of manipulation. It wasn’t until I was a teenager and I had come out that the real abuse began. I was living with my very own version of Dr. Jekyll and Mr. Hyde and I couldn’t seek help. I’d heard about what CPS had done to my friend in a wheelchair. My family knew I was too scared to call for help, and didn’t think what was going on was wrong, anyway.

In my darkest hour, I tried to slit my wrists. I wanted to die. I wanted the pain of living in such a harmful environment to go away. I was being fed depression pills because I was believed to be depressed, but all of them made me sick. In my darkest hour, I took a sharp metal watch edge, and whittled my wrists until they were raw. In my darkest hour, I didn’t feel a thing.

I was over 18, during this time. I was stuck living in my parent’s home. I can’t recall why I was punished. Perhaps I was mouthy. Perhaps I was a jerk, but Dr. Jekyll told my brother to turn off my wheelchair in the back (so I couldn’t move or reach the button to turn my chair on) and wheel me into my bedroom to sit, alone. My brother pushed me in and then I couldn’t move. My wheelchair, once a source of such freedom became a jail cell to my body and I felt such terrible anguish. In my darkest hour, I grabbed the only thing I could reach; a metal watch and I whittled. I whittled and whittled and cried out for someone to end my misery and my pain.

Then Mr. Hyde came into my room, acting like nothing was wrong. Looking at my wrists, Hyde threatened to put me in the hospital, but my dad didn’t have insurance (which meant I didn’t have insurance), so it wasn’t all that important anyway. It wasn’t a real suicide attempt, so it wasn’t worth seeking help for, I guess. I ended up enrolling at Wright State, three hours away, shortly thereafter. That was truly the first step in saving my life. You know the funny thing? Once I finally got away, no medicine was needed. I’m no longer depressed!

To think this was an isolated incident is foolish. There were many more abusive things that I feel were done to me, but other people seem to think I deserved them. I was taken care of, in a wheelchair so why shouldn’t I be grateful? I don’t know if taken care of is the right word. I do know that I should be grateful for “sacrifices” made to care for me. I’m not sure if being abused is constituted as care you should be grateful for, but that’s my big dilemma.

There was something done so bad, I’m still embarrassed to talk aobut it. It’s the most traumatizing thing I’ve ever experienced and my girlfriend, Ashtyn, is the first person I’ve told about it. What I can share is all the slaps across the face I received. Dr. Jekyll would get mad if I was mouthy and I’d get flat palmed across the face. Angry, I’d go to bed and I would cry myself to sleep. Knowing my weakness for sleep and my ability to say anything people want to hear when asleep, this would be the time when Mr. Hyde would come out to beg forgiveness and not allow me to go back to sleep until said forgiveness was received.

Sometimes, I feel like I’m crazy, because I’ve not spoken about this with very many people. I’ve blamed myself for this. I’ve thought I deserved this. I believed I had all of this coming to me. I’m no longer at this place where I believe it’s my fault, but this truly has helped to shape me as a person. I am who I am, and this has affected my life. There’s so much more I could say or share, about what I’ve endured, but this is getting pretty long, as it is.

So many people go all their lives with other telling them they’re not abused. Any unwanted touch or treatment IS abuse. I didn’t want Dr. Jekyll to lay her hands on me in the way she did. I didn’t ask for it. It affected me negatively and therefore it IS abuse. It’s abuse because I SAY it’s abuse. It was my body being violated by a slap or something worse, and I didn’t want any of it. That’s why I wanted to share this with all of you.

If you’re in a similar situation, you are not alone. There is hope. I got out and I’m in a wheelchair. I require the care and help of others, but I managed to find a way to get it without Dr. Jekyll, Mr. Hyde, or her iron fist.

Technorati Tags: darkest hour, slap, abuse, wheelchair, unwanted, Dr. Jekyll, Mr. Hyde, pain

Like most little kids back then, I had a Cabbage Patch Kid. We held a contest on our website, LI Kids, offering Cabbage Patch Kids for their 25th anniversary. I can’t tell you how many people left a comment about how their sons, grandsons or brothers had Cabbage Patch Kids. I didn’t know they were so popular with boys. One thing I also learned from this contest was that Xavier Roberts, the creator of the Cabbage Patch Kids, doesn’t like them being called dolls. They aren’t dolls, they’re kids. In fact, they were originally called Little People. Perhaps he thought they’d appeal to all kids regardless of gender whereas most boys don’t like to play with what they perceive to be dolls.

Another popular option when I was a kid, though I was a little too old for this, was the My Buddy doll. My younger cousin had a My Buddy. These dolls were specifically designed for boys. They were advertised as being rough and tumble dolls who could go anywhere little boys went. I always thought My Buddy was a little silly, but always took my Cabbage Patch Doll, Daniel, wherever I went. Perhaps it was My Buddy’s funny design? Whatever it was, I know many little boys who had My Buddy Dolls and it was quite acceptable to have one in the 80s.

Nowadays, some parents scoff at the idea of their male child playing with dolls. What a silly notion. Why would a boy want to play with dolls? Our culture has ingrained these children with gender-specific thoughts. I’ve heard both my son and my nephew say things like “Ew, dolls! Those are girl toys!”

Since the time toys such as dolls were invented, they have normally been perceived as girl toys, but what about the little boys who do want Barbies? What about the little boys who do want to play with little dollies? Could this be part of why men have become so disenchanted with caring for their own children, because a doll is almost like a pretend child. I know many men who leave all the “child-rearing” to their wives. That’s women’s work after all, isn’t it?

Regardless of whether a boy wants to play with a doll or not, those boys who do play with dolls should never be teased about it. My 13 year old son who has a form of autism, has a bigger Care Bear collection than any kid I’ve ever met. Most kids his age are far past the Care Bear collecting phase. He could seriously get teased unmercifully if kids found out he had such a collection. Why? What is the point in denigrating a child if they find comfort in such things?

Care Bears make my son happy. Why should I deny him such a simple pleasure and worse yet, why should the outside world have an opinion in what he owns or not?

I think this all comes down to the idea of gender? Can anyone give me a definitive definition of gender? The world has been designed as though there are two genders; male and female, but it isn’t as cut and dry as that. Gender isn’t black or white. There are gray areas. Gender can be fluid. A little boy may want to play with a doll, but might also want a truck, too. Every person is different and every person’s gender is different.

That’s why some girls are what we like to call “more girly” while others are tomboys. Gender isn’t static so why apply these rules to children, whose minds are being molded and shaped in these early stages, by forcing them to maintain a gender role that might not even suit them?

What’s your thought on boys playing with dolls? Would you let your son play with a doll if he really wanted to? Also, why do you believe that boys playing with dolls has become somewhat taboo in the last 20 years?

Technorati Tags: My Buddy, Cabbage Patch Kids, boys, dolls, gender, gender specific, kids, toys

You can get a brief synopsis of my life through my About Me section, but that hardly touches the surface of my life. This also talks about my transition from female to male, as well as the surgery I almost didn’t survive. For a long time, I blamed myself for everything. I’d been told by so many people I was a terrible person, always to blame for all of the trouble that happened in my family. I was told I should be grateful for what ‘sacrifices’ my family made, even though those sacrifices came with a price (often abusive in nature). I believed it until I finally opened up to a therapist for the first time (I’d been in therapy since I was five, but never really opened up or spoke – I was rather sullen and that often led to me being blamed for all problems family-oriented) when I was in college. For the first time, I was told, maybe it wasn’t my fault.

That was nearly ten years ago, and I still struggle with the issues caused by my life in a dysfunctional family. The only true sacrifices made were by my older brother, who was often talked into not doing something due to my disability (such as going away to the college of his choice). It’s something I now believe he blames on me, and is part of why we haven’t spoken in five or so years. While my dad is dead, and I’ve come to terms with our tumultuous relationship (we talked a lot while he was in the hospital dying and worked out our issues), I don’t and won’t ever speak to the person I once called my mother.

I can forgive what she did to me, but I will never forget the years of abuse and torment she put me through nor can I forget her response of “so what?” when I confronted her on the telephone about some of the more physically hellish abuse (she never saw it as abuse – she was ‘making me beautiful’ – against my will) she inflicted upon me. She doesn’t see it as abuse, nor does she see it as her fault.

The final straw was her treatment of my son, CT. He is 13 years old now, and autistic. For reference, he’s my adopted son. I’ve been dating his mother since 2002. Not only did she yell at him repeatedly, and take things out of his hands without asking for them (something you never do to an autistic – it was mine and I let him hold it, but she neglected to ask that – she just grabbed it from him). She also told family members that he (at age eight) couldn’t really be taken out in public due to his autism (a lie).

She said this because I chose to get us dinner delivered when she visited us merely because he wouldn’t eat from that restaurant (he would have had to sit doing nothing at the restaurant while we ate) and I prefer eating at home anyway. He would have gone and sat there, but seriously, how fun is that for anyone? As a result, his mother (Ash) and I were invited to my grandparents anniversary, but I was told he wasn’t welcome. I opted not to go (I had fractured my tibia and was bed ridden anyway). It’s bad enough she messed with me, but to mess with an innocent child that isn’t even hers?

We haven’t really spoken (except when she answers the phone at my ailing grandmother’s house – where she lives) in the past five years. I am happier that way. She brought so much anger, anxiety, and roller coaster emotions to my life, so that is part of why I’m writing this book. I expect I’ll be told this is all a lie (she denies she said “so what” about the abuse to family, but I wasn’t alone when I was on the phone – Ash also heard her say it since I often have to use speaker phone), but nobody likes to be confronted with such ugly truths. I just hope that I can find an audience for this story and hopefully help someone else, disabled or not, who is living in a hellish, hateful environment.

I managed to escape at age 19, after one unsuccessful attempt trying to cut my wrists. Now, I don’t even need antidepressants. I still get sad, and upset when I think about the past sometimes, but everyday I try to remember what a nice future I’ll be living and a comfortable present I endure. That makes straightening my life up worth while.

Technorati Tags: working, book, Ash, Dominick Evans, abuse, life story, writing a book, novel, non-fiction

As a child, I thought MDA could do no wrong. MDA diagnosed my disability (wrongly, I was diagnosed with Werdnig Hoffman (SMA I) when I in fact have Kugelberg-Welander (SMA III)) at age 4. I was the MDA poster child for Northwest Ohio in 1990 and 1991. I was the Ohio State poster child/goodwill ambassador in 1992 and 1993. I was committed to helping raise thousands (if not millions) of dollars for an organization I always thought would have my back.

Things started declining in the early 1990s. In this decade, MDA cut its Camp program from adults. When I was a child, camp had multiple adults attending. For some adults, this was the only vacation they ever got. This is the only time they were able to get out of their home and away from their family (if they lived with parents, able-bodied siblings, spouses, or otherwise). It was their vacation and necessary to their health and well-being. I can’t tell you how much I learned from the adults with various forms of Muscular Dystrophy. If nothing else, they gave me hope of a future. I saw actual adults surviving into adulthood with diseases doctor’s said could possibly kill me or my friends before we finished adolescence. That was one of the most important lessons I learned and without seeing actual adults with MD, I wouldn’t have learned it.

Well, in the 90s, adults were cut from the camp program. MDA said they did it to save money, but it is now apparent this was a first move in shutting adults out of MDA programs. The new rule was, you had to be 21 and under to attend camp. Well, now that rule has been cut, too. This year was the last year those with Muscular Dystrophy between the ages of 18 and 21 were able to attend camp. Now the rule is, you must be under the age of 18 to attend camp (6-17). There have been a plethora of excuses from MDA for why they’ve decided to cut the age again. Saving money was the biggest reason. Another excuse was it cost too much to insure both children and adults, so the adults just don’t get camp.

If that was the only thing that was being taken away from adults, I might turn the other cheek. I do think MDA Camp was vital to the well being of all who attended regardless of age, but it is pretty clear MDA, as a whole, has stopped caring. The organization is about making money; money which pays the CEO of MDA more than the president of the United States makes in one year. He makes over $399,000 per year. Just for reference, that could buy 16, high quality power wheelchairs for those with Muscular Dystrophy or 100 decent manual wheelchairs. This is where your money is going instead of to the patients.

I hear many parents say, MDA has been excellent to me and my children. Yes, they were excellent to me when I was a child, too. Now that I’m adult, MDA has pretty much thrown me to the wolves. Case in point, a few years ago, I tried to go to the MDA in my area. This is not the MDA I grew up with, by the way. This is one in Michigan where I live now. I asked them how long I should schedule my ride for, since I have to travel by public transportation. They told me no more than an hour. So, I told my ride to pick me up within an hour and a half, just because sometimes appointments do run over.

I sat in the office for nearly an hour, waiting to get in. I told the receptionist, this was a time sensitive appointment. They knew I had public transportation coming. Well, nearly an hour into waiting, a small child in a wheelchair enters the waiting area. The mom says something to the receptionist like, “We’re a little early today. I hope that’s alright.” Within five minutes, the child was taken back. I was already 45+ minutes late for my appointment, by this point. I was finally ushered in as my ride was coming back to pick me up. The doctor blamed me for the whole thing and then the patient coordinator of MDA shared private medical information of mine with family members I’m estranged with (who I told MDA could not get information on me), which is, by the way, illegal. I’m over 21, so I wrote to national MDA about the matter to report said illegal activity.

I no longer go to that MDA. In truth, I don’t go to MDA period, anymore. They never return my calls, like when I asked for a referral for a pulmonologist and called them 8-10 different times for said referral. I eventually had to get one from my general practitioner. They rarely get the forms that need to be sent to the people requesting them (like my wheelchair guy had to haggle with them to get diagnosis information to him so he could present it to Medicare for my new wheelchair). The organization just isn’t efficient anymore.

That’s not the worst of it though. MDA believes only children can garner sympathy to make money for their cause. I’m not even going to get into the “garner sympathy” thing, but I’m sure you can guess my thoughts on that. They don’t often use adults in their telethon, unless said adults have ALS or contracted the disease as adults. Once a child diagnosed with MD becomes an adult, I’ve seen MDA turn their back on the child, even if that child and their family have worked tirelessly for the organization for years. I can give you a personal example of this.

Back when I was poster child, I saw adults at the TV station during the telethon. Some even helped out by answering phones or sorting mail. At one point, my entire family worked on the telethon. I was on the telethon. My brother ran errands and helped with the food for the event. My parents worked in the mail room and organized food for workers, the TV hosts, and presenters/guests appearing on television. My grandfather (a former mailman) worked the post office with his retiree friends. My grandmother helped with food. My family isn’t the only family to help. One of my closest friends had an interactive family and he’d been going to the telethon for years.

Well, a year ago, he was told not to come to the telethon anymore. MDA was going in a new direction. National only wanted them to focus on the younger kids. So, this family that had been serving MDA for over 20 years was basically shut out from participation in the telethon, all because the guy is too old for MDA’s standards. When I heard this, this was really the icing on the cake. Sure, MDA will help you if you’re a kid, but let’s forget about it, if you’re an adult.

So, what is MDA’s problem? Why are they so ashamed of their adults with MDA? As a whole, I guess we, as adults, are no longer profitable to the MDA. They don’t really buy much equipment anymore. They won’t buy full wheelchairs, just provide $5000 every five years for help buying one (but some chairs cost upwards of $15,000 these days). They’re more willing to bill insurance than cover the cost of clinic or braces or any of the other things they say they are buying on their yearly telethon. The MDA has gone downhill and people need to know this.

If you’re a parent with a child who has MD, think about your child’s future. One day, they will become an adult with MD. Are you comfortable with the thought of MDA turning their back on your child? I’m not, so I’m willing to step up and let my voice be heard on the matter, every chance I get.

Technorati Tags: MDA, shutting out, adults, programs, Muscular Dystrophy Association, camp, telethon

So, without further ado, here’s the episode:

Do you remember watching this as a kid? Is this show as good as you remember it to be? Feel free to leave a comment and let me know your thoughts!

Technorati Tags: Transformers, episode 1, More than Meets the Eye, 80s, flashback, TV show, kid, childhood, cartoon

I’ve been in therapy since I was five. That’s about the time I realized I was “different” due to my disability. That’s a pretty early age to realize such a difference (typically kids begin to realize between 8-10, sometimes later). My doctors took no precautions in recommending I go to therapy. I don’t really remember much of it, except I got to play with toys and I never told my therapist anything of substance.

As I got older, and I began to realize my family was a bit dysfunctional, I walked around with a chip on my shoulder. In therapy, I wouldn’t share anything of importance and often treated my therapists like scum. I didn’t want to be there, so why not make them suffer, too? I was deemed a ‘problem child’ with my therapists soaking up every little word my parents said. They believed every half-truth and didn’t even question why I had anger or was struggling more than any normal teenager should.

What became apparent is after “coming out”, the real abuse began. To me, it is abuse. It was unwanted. It was unwarranted. It was unnecessary. The funny thing is, I blamed myself for it, that is until I got into college and “chose” to go to therapy. I had been in therapy so long, by this point, that it was a no-brainer I’d seek out a therapist myself. Except, this time I didn’t ignore my therapist. I didn’t make up things just so they’d leave me alone. I actually spoke to my therapist. I actually explained to them what was going on in my life and for the first time, someone said…”did you ever think this isn’t your fault?”

I’d been so used to being blamed for everything that it was a revolutionary, almost empowering, feeling. I saw my therapist more frequently after that and I began to re-live moments from earlier times in my life. There were signs, early on, that not everything was as it should be in my home. In public, my family tried to paint a perfect, “caring” and involved picture, but beneath my fake smile and bubbling personality was the pain of living in a dysfunctional home.

They say abuse repeats itself. I remember the person who abused me telling almost the same story. This person had been beaten down by their parents. This person had been constantly told it was their fault. This person blamed themselves until someone outside the situation observed that perhaps it wasn’t this person’s fault. This isn’t just a case of history repeating itself. This is a case of a cycle of abuse continuing. I’ve tried my hardest not to continue this cycle with my own son. Some days, it’s incredibly hard not to revert to the only way I knew existed for families, but every day is a new day and I’ve made great strides in this area.

This person is no longer in my life. It doesn’t matter if the story told is that I’m an abandoning, brainwashed person who doesn’t give a lick about their family. I had to break that cycle for my own piece of mind. For my own family, I had to make sure that I had a clean break from my past. Unfortunately, this person believes I’m prone to exaggerations and that what they did to me wasn’t truly abuse (but isn’t that what their own abusers said?). I’ve had to come to grips with that and I’ve been writing my thoughts down to help me get through this and move past this.

So, why am I writing this? As part of the cleansing of my soul, I’m writing a book on my life. I’m explaining events in my life that have made me who I am. My goal is to make others see that despite a multitude of obstacles placed in our paths, we can overcome them and live healthy, happy and relatively sane existences. It has taken me almost 30 years to realize that.

That being said, I want to know what you consider abuse?

Is berating someone abusive? How about holding them down physically in any way or for any reason? Obsessing over your child’s appearance to the point of making them miserable? Trying to live vicariously through your child and then blaming them for not following your set path? Something else?

Please feel free to leave a comment with your thoughts on this matter.

Technorati Tags: abuse, child abuse, what is abuse, physical, mental, emotional, disability, parenting, harmful, berating