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

I met Erin on Twitter a few years ago. She is known as @QueenofSpain. I liked her name instantly. A little known fact about me is that at four years old, I apparently declared myself the reincarnation of the Queen of Spain in response to my parent asking “Who do you think you are, the queen?” I had no idea then where Spain was. It was one of those eerie little kid talking about places and people they have no knowledge of kind of moments as I knew names, places, and a wealth of information about a former Queen of Spain. Regardless, I felt an immediate kinship to Erin because of this, whether she knew it or not.

After meeting on Twitter we connected on Facebook. We chatted occasionally. I had no idea she had Lupus. I learned her husband worked on films and I am studying Motion Pictures. I learned she was a reporter and she had children, one who was struggling with a potential “invisible” disability. I have a son with Aspergers, Bi Polar, and ADHD, so I could relate. I saw her many, liberal rants about politics. We share many of the same views.

As I got to know Erin I realized we shared a lot of the same beliefs – about family, a love for Detroit sports, and a rich Polish heritage. We grew up only an hour apart with long Polish last names. I am a bit younger than her, but not by much. I also learned we shared many of the same struggles. I have watched as Erin has come to need a wheelchair and understood her as I had been there myself, a decade earlier. I have read about her struggles with healthcare and having to get assistance. I have felt the political struggles she has fought online personally as we have often come from the same place, both having “disabilities” if you will, which allow for insurance and governmental abuse.

Erin struggles every day because of Lupus. Her children have had to sit by and watch her go in and out of the hospital. They have experienced so much and yet they seem to be very well adjusted, happy, caring children. In spite of her struggles with Lupus, Erin and her husband, Aaron, have raised their kids to be unique individuals. They have raised them to care about their family, but also strangers on the street. Erin has raised these children not to see themselves as better than others, but as compassionate human beings. I am proud to know Erin because of this. There are not enough kids being raised to think for themselves, to be strong and independent, but also to love their fellow (wo)man. It makes me worried for our future, with so many self-serving children being raised to believe they are better and deserve better than others.

I commend Erin for resisting the status quo. It’s hard, in a world where conforming seems the easy route, to allow our kids the freedom to be as “weird” [sic] as our kids can be. We do not want them to hurt. We want them to be able to fit in. We want them to have friends. We want them to be able to hide their differences so they are not teased for them. Erin, instead, is teaching her children to embrace their differences. She has a son with OCD and Tourettes and yet she feeds his interests in the solar system and Stephen Hawking. Her daughter has a crazy style of dressing that might not always match in conventional ways, and yet Erin encourages her to dress how she feels, often allowing her to express herself in adorably vibrant ways. These are happy children living in a time when not many children can truly experience happiness.

The reason Erin has succeeded at raising such great kids is because she herself is an ardent supporter of the people. She fights for the rights of those with disabilities and illnesses, the GLBT community, children, women, and other minorities. She supports free speech and free thought. She is not afraid to speak her mind and put bigots in their place. I read her well-thought-out rants on politics and it gets me fired up. It demands my own response. Erin experiences our joy with us and cries with us at the sadness we have endured as minorities. She truly cares, in a world where not many do anymore.

So…let it be said that I do not admire Erin because of Lupus, but in spite of Lupus. In spite of Lupus she is still living her life as a fighter for the people, as a fighter for her kids, and in the process is still fighting for herself.

To learn about Erin Kotecki Vest visit her website at: http://queenofspainblog.com/

Technorati Tags: Erin Kotecki Vest, Queen of Spain, Blog, Lupus, Admire, Blogger, politics, liberal, fighter, human rights

There is NO EXCUSE to bully…not one. Even if a child is taught that people with disabilities are less, because that is how many were treated in Biblical times, or that being gay is a sin because their church says so, that still does not give a child the right to verbally or physically harass another human being. That’s right. The person being bullied is human…just like you and me. They breathe oxygen. Their blood is red but looks blue in the veins beneath their skin. They have feelings and emotions. They feel sadness and joy, excitement and fear. Essentially, they are just like their bully physiologically; both are Homo sapiens.

If bullies remembered this, we would have no need for such legislation. We would not need to make a special law to protect children that are bullied because there would not be any bullying. The reason bullying occurs is because these bullies are often bullied themselves. They are devalued and made to feel like they are not human. They feel good by dehumanizing others…by treating them as though they are subhuman. Many of these bullies do not even consider their actions, the hurt and pain they are causing, and fail to recognize their victims are human themselves.

As much as I wish I could completely blame the government, this is where parents need to step in and teach their children how to treat other human beings. Our words and actions are often critical of others. We make fun of people without even realizing it. Look at the way we bash celebrities we cannot stand…because we do not see them as people, as humans. It is okay for us to criticize them since we do not know them. We grow up learning this as we have done the same to peers we are not able to relate to…the ones that are different. We are taught not to see them as humans…as people, like ourselves. We can torture them because we do not believe they are just like us emotionally…that they have the same kinds of feelings, themselves.

I was tortured by my peers in such a way, from the time I entered public school. In 1986, I was mainstreamed because it was the law and because I was smart. It was in this first year of school that kids all over the elementary school I attended tortured me on a daily basis. They called me a horrendous name, for a five year old. I was called “duck”. The reason behind this was my unattractive gait, a symptom of having Spinal Muscular Atrophy. While walking, my step was more a waddle, henceforth the reasoning behind calling me “duck”.

It got to the point where I could not walk down the hallway without hearing other students, from a variety of grades, quacking at me as I passed by. I would hear snickers and laughter following their quacks. To add insult to injury, I was cast as a duck in our Kindergarten play. Everyone wanted to be a bunny rabbit. I could not hop, but boy could I waddle. So, guess who was forced to be a duck? I remember crying and having to be convinced to play a duck. None of the adults could comprehend why being a duck was so upsetting to me, but then, they did not experience such harsh teasing.

It was 1987 when I first declared it was better to be dead than to live with any type of difference. What 6 year old should have to have these thoughts? Back then, my school was as guilty as my peers were. They knew the teasing and bullying was going on and yet they did nothing to stop it.

Things did not get better as the years progressed. The school attempted to force me to go ice skating, for gym, and threatened to fail me if I didn’t go. I was teased for my disability, my clothing, my family’s financial status or lack thereof, my family’s unpopularity, my weight, my hair, the way I spoke, the way I moved. I was deemed stupid, fat, ugly, nasty, pathetic, worthless, a loser, evil, a nothing. Not a day went by, in the 13 years I attended the Lake Local School system, where I was not called names, made fun of, or treated like a piece of crap.

In high school, things got worse. I was the butt of the senior joke one year. I don’t like talking about it much, but just know it involved dead rats. My doctor had me removed from the school, for my safety, as I was recovering from surgery that had almost killed me, at the time. I had just returned after missing nearly six months of my sophomore year. When nothing was done to stop the bullies, I was forced back to school. As bad as my peers were, I was equally as tortured by the administration of the school, who broke various laws pertaining to my lack of IEPs and refused to offer services to help me be independent at school, even as they accepted extra money for me to attend their school.

Raised Catholic (or Lutheran, prior) I spent much of my nights crying myself to sleep and praying for God [sic] to either change me into something better or kill me. Neither happened, and I was ready to kill myself. In the time since I managed to escape that environment and a nasty home environment, I have realized that life can get better, but it is still hard. It is a constant struggle to be different in this world. There will ALWAYS be bullies. There will ALWAYS be haters. However, as a kid, these were things I could not comprehend. Children want to see the world through rose-colored glasses. Finding out the world is not as sunny as it should be is difficult to understand.

I had no protection. I had nothing to stop my bullies. I also did not have the government backing an idea that bullies can justify their reasoning for bullying. This bill is wrong. Since the government does not appear to be willing to budge on this awful legislation it is up to parents to take matters into their own hands. Please…I beg of you. Do not let your CHILD be a bully. Do not let your CHILD devalue another human life. We are all different in our own way and that should be celebrated, not devalued. Teach your children now and help us build a better world, because the government can do nothing but seem to make it worse…for everyone.

Oh, and Michigan…shame on you. I’m glad I left. I won’t be coming back anytime soon.

Technorati Tags: bully, bullying, parenting, parents, Michigan, torture, teasing, torment, peers, disability, GLBT, gay suicide teach, children, school

Everywhere I go; the classroom, on campus, even on the bus, I hear people misquoting things about the protesters. While I have tried to correct some of them, others become argumentative, and obviously have little to no understanding of what this movement is about. For the sake of time, I have decided to include some of the answers to the questions I have heard people asking or corrections to the misquoting people are doing, as an attempt to denigrate the Occupy movement.

1. Occupy Protesters Need to Get a Job or Go to School!

This one is kind of ridiculous. A lot of protesters are college students, already. Many also have jobs. Most of the people I have spoken to, who have been organizing Occupy Dayton are actually going from their jobs to the Occupy site. They work in shifts so that those who have work or other obligations, can attend to their obligations. Both Ashtyn and I have been protesting. Ashtyn has a job. I have a small on-campus job working for Student Government and I am a full time student. Yes, there are many people who are unemployed who are protesting, but unemployment levels have skyrocketed, so to assume that the unemployed will not be protesting would be naive. These people WANT jobs. Many of them actually have college degrees. Some are even considering leaving the U.S. if they cannot find a job soon, as there may be more work opportunities abroad.

2. The Occupy Protesters want to punish hardworking, rich Americans.

The whole 99% movement is geared more towards the wealthy corporations and not the people. I, personally, do not feel it is prudent to punish a hardworking American, especially one who has pulled themselves up from the bootstraps to make themselves a decent living. The corporations and politicians who are all quite wealthy are what the majority of people in the Occupy movement are protesting. We believe that it is not fair to force small business owners to pay excessive taxes while the upper 1% of corporations often do not pay a CENT in taxes. They get write-offs and many have special interest deals with Washington.

General Electric has not paid any taxes. Goldman Sachs, Bank of America. All of the banks we bailed out with our taxpayer dollars have turned their faltering businesses around. They are making millions, if not billions. Instead of paying back the money they were given, or at least paying taxes on their current income, these corporations are able to get tax exemptions and have used their money to give their upper management bonuses, buy exorbitantly priced gifts like corporate jets, and have spent their second chance dollars irresponsibly.

I should also mention that many individuals who make a lot of money say they would gladly pay extra taxes to help other Americans. However, this is not happening, nor are they the group of people we are targeting with our protests. It seems unfair to have middle class Americans paying over 20% of their income and the businesses that can afford to pay a lot more money than any other business are paying 0% of their income. This is part of why people are protesting.

3. The protesters are a bunch of whiny, trust-fund kids with no motivation. They live in their parents’ basements and have no idea what being self-sufficient means.

I wish I was a trust fund kid, because I would have plenty of money to have all of the things I want and need. If I had a trust fund, I’d also have a lot more money to help others out. While I have met a few people who still live with their parents, as students or because they lost their jobs and are trying to get back on their feet, the majority of protesters have their own homes, put themselves through school, are currently in school (on their own), are working a job or jobs, or have been laid off and are trying to find a job. Of those still living with family, most of them have lived on their own and have earned their own way, at some point.

Yes, some people have money and jobs that are supporting this movement, but that is because they see what the rich are doing to eliminate the middle class. These people want something to change for others. They know how lucky they are to have health insurance, food, shelter, and to live with no fear of having their house, car or other property repossessed. They stand in solidarity with the 99%.

4. The Occupy Movement is disorganized and has no real goals.

This is inaccurate. Yes, when things first started happening there was a bit of disorganization. Any new organizational effort has its bumps it must overcome. However, at least in my own area, I have watched this go from a group of people meeting up with similar goals into a full-fledged movement with united goals and solid ideas on how to implement these protests. There are specific things the Occupy Dayton movement hopes to accomplish. These include enacting legislation that will punish those involved in white collar crime, closing tax loopholes, and preventing politicians from mutually profiting by being held in the pockets of corporations.

5. The Occupy movement is anti-Semitic, anti-Republican, and anti-Capitalism.

We’ve all seen the video of the Wall Street protester who was saying anti-Semitic things, in spite of claiming to be a Jew himself. I have to tell you that every movement has its fringe group members, who show up to cause trouble or whose goals do not fit with the majority of those assembled. We see this at Tea Party rallies a lot. How many times have we heard Tea Partiers swear they are not like the racist guy at their rallies or the anti-veterans, anti-disability rights assholes who make their entire group look like a bunch of douche-bags? The media searches for these kinds of idiots to interview because it makes for far more interesting journalism. However, the vast majority of protesters are about equality, peace, and unity. Racism, Antisemitism, etc. all go against the entire purpose of this movement.

The anti-Republican claims are unsubstantiated. Many of us blame ALL of the politicians. This is not a rally in support of Obama or any other politician. Occupy transcends political parties to bring together Liberals, Conservatives, Libertarians, Republicans, Tea Partiers, Democrats, Socialists, Anarchists, Independents. You name it, the political group is represented. This also means that not everyone is anti-Capitalism. The capitalist-esque system is not being utilized properly and therefore it is not working. Many Occupying WANT to fix the system. Yes, some people hate capitalism, but most of us understand it is not going anywhere.

Occupy ___________ is about standing up as Americans and letting our voices be heard. If that is un-American I do not know what being American means and I would be disappointed to be a part of such a country.

Technorati Tags: Occupy, Protesters, Wall Street, Misconceptions, List, Protest, Rally, Dayton, Ohio, America, Americans, Liberty, Occupy Movement

I thought I would share the list of things so that other, aspiring filmmakers avoid making the same, first-time filmmaker mistakes with their own projects.

1. If casting friends, be careful. I have found the actors I did not know prior to shooting have been far more reliable than the friends I asked to be in the production because they seemed interested in it. All of my friends I cast were in very small, one episode roles. Only 2 or 3 of the 12 have come through for me and I have had to find other actors to replace them. Not only is it imperative you cast friends that are reliable, you also need to make sure if they are not it does not ruin your friendship. Last minute cancellations are especially friendship-ruining.

2. Paying your cast gives you far more freedom. With FACESPACE being a full length, web series (12 episodes), we had to make a lot of accommodations. This meant we had to juggle shooting around 25 different work, school and personal schedules. When you pay you can set your schedule for when you want, but it was not fair to ask our actors to take off two months of work when they were doing us a favor by being in the series.

It also ensures you avoid actors saying things like, “I’m not getting paid for this” if they decide they do not like what is in your script. The one thing this has taught me is that I will always pay my cast and crew. That means I need to apply for grants, work on making money through advertising and need to start fundraising for season two as soon as post-production begins on season one.

3. Not all actors take non-paying gigs as seriously as paying gigs. This is sad, but true. I am an actor and have been acting on and off for over 20 years. I see every project as a chance to polish my craft and therefore, a way to put myself out there. That means I treat the free gigs just like the paying gigs. If my acting is off, then whoever sees the video of my acting is going to think I am not that good since I am not giving my best effort.

You never know who is going to see the show, film or whatever work of art you are doing. It reflects poorly on you if you do not give your all and you have the attitude that the production is non-paying so it is less authentic. The key is to try to find actors who take your project as seriously as you do. Unfortunately, it can be hard to know who that is without knowing the actors beforehand. A 30 minute audition is hardly enough time to discover who is truly serious about your project and who is just blowing steam.

3. Not every actor is going to like your specific directing style. Just like there is no right way to direct, there are different kinds of actors. I am a laid-back kind of guy. I am easy going. I have a definite vision for my projects and characters in them, but I also like to give my actors some creative freedom. I like to hear their ideas and interpretations of their characters. While this works for some actors, others need to be directed with a lot more focus. You need to find a way to balance those who prefer to do their own thing and those that need the extra guidance or re-cast if you can’t do the latter.

Also, some actors require far more ego stroking to be happy on set. I tend to be the kind of person who speaks up if I dislike something. I have to remind myself that complimenting can be beneficial. However, some prefer much more butt-kissing and that just isn’t me.

4. Sometimes you just have to let things go. There will be tension on set. It is inevitable in such high stress situations. You have set issues. You have unexpected catastrophes. You have to pick your battles and realize others just cannot be won. The goal is to learn from them and do what you can to make sure they do not happen during your next project. Everything you film is a learning experience. It can be best to move on for the sake of the other cast and crew members who are giving 110% and want to see this project succeed as much as you do.

5. Trusting technology is inevitably going to lead to failure. Next time, each actor is getting a binder with every script in it, as opposed to emailing them scripts. Emails get lost. Technology can fail. Sure, actors can lose a script, but inevitably, it looks better on the director to be overly prepared like this than to look like a douche when emails do not go through.

6. Make sure your actors understand there will be downtime on set before they agree to be a part of your cast. Downtime is a big part of filming. Unfortunately, some actors, especially newer actors, think crew members are just wasting time when they are actually doing intricate, technical jobs essential to the running of the production. These are the kind of actors who can drag down a shoot and create tension on set.

7. While “if it is not fun, don’t do it” should apply to most aspects of creative endeavors, sometimes you must sacrifice and get through the nasty parts just because there are so many people counting on you who have faith in you and your project.

8. Do not start shooting without a full cast. Enough said!

We are in our last week prior to post-production and we have had a blast shooting our first major project. We probably should have started with a short film BUT this has been an amazing experience and opportunity that has made me realize just how much I want to make a career out of being a filmmaker.

Stay tuned as I share more about my experience shooting FACESPACE in further blog posts.

Technorati Tags: FACESPACE, Dominick Evans, film, lessons learned, web series, film set, actors, television, filmmaker, director, production

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

The narrative I developed stars Lauren S. Deaton and Rick Church. I was inspired to make this by Alfred Hitchcock and his style of filmmaking.

Technorati Tags: 16mm, black and white reversal film, student film project, K-3, Alfred Hitchcock, Dominick Evans, Video, film, short, narrative, suspense, thriller

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 was the youngest child born to my father. He had two sons from a previous marriage. My oldest brothers are 22 and 20 years older than me. I never even knew about them until I was 4 or 5 years old, when I met my oldest brother, Dave and his family. When I was born, my dad was 47 years old. I spent most of my childhood explaining to people he was not my grandfather. He was my dad. To me, this could get pretty embarrassing, especially when I had peers who had dads who were in their 20s. Just for reference, I also have a full-blooded brother who is 2.5 years older than me.

When I was little, my dad lost his job. He was a Tool and Dye Maker. He apparently made pretty good money doing that, but it was dangerous and he was getting older. Around this time, I was having medical tests galore to determine my diagnosis, which was later confirmed as the muscle disease, Spinal Muscular Atrophy. After my dad was laid off, he returned to college at Owens Community College. His wife was also in college, so I spent a significant amount of time with my grandparents, Willis and Melba.

A few years after my father went to college, he received his degree in Accounting and got a job working as a Tax Commissioner Agent with the State of Ohio. This meant he worked a lot in Cleveland and Columbus. It meant we did not see him much, except on weekends. This left my brother and I exposed to the thoughts of a woman desperate for attention and love from her children. I remember being told my dad did not know how to show love and affection because he was not overly emotional. To a little kid, all you know is your dad isn’t affectionate and you think that he does not love you. I believed this.

Our relationship (my father and mine) deteriorated, as I became quite a brat during the time he was home, baiting him to piss him off. I now understand this is a coping mechanism a lot of children use. If you can get someone mad at you and you feel they have abandoned you (even if they haven’t really) then it’s justified. They were going to leave anyway. They were mad at you, so you deserved to have them abandon you. I did this quite a bit, especially when we had family time. We never really fought if we were alone, but I felt incapable of showing him niceness, love or compassion in front of others, because I felt so hurt and betrayed by him.

My father was in a very serious car accident when I was about eight. He was okay save for scrapes and bruises, but his car was totally crushed. I remember being scared, but I still believed he did not love me. Little things his wife would say would provoke thoughts of inadequacy. It was as if she was turning my brother and I towards liking her best, because she was there for us, or claimed to be, and our father was both physically and emotionally vacant.

I did have a father-figure in my life, and he showed me love and compassion I did not feel I received from my father. My dad would always say he was too old to lift me up, even though I was tiny. This man would carry me around on his shoulders, up and down steps. I even remember loving going to my uncle’s house, who would throw me around in the air. That was so much fun and something I could never experience with my dad. It was another reason I resented him and led to me refusing to even hug or kiss my dad, as a result.

As I grew into my teenage self, I grew more distanced from my father. I became more independent. I loved sports, so I picked my own teams to like, not wanting to like his teams. Both my dad and she stopped taking me places because I had slowed down in my ability to walk normally and quickly. It became a “burden” to them to take me places, as I had no scooter or wheelchair. This led to even more resentment, especially when my older brother got to go wherever he wanted.

When I was 13, my father-like figure died and my world was turned upside down. I felt more grief and darkness, as here was someone whom I felt actually cared about me and he was gone. I found little comfort from my family, who did not truly understand the depth of the pain and rejection I felt from my own father. It took me a really long time to get over this death, and it made me dislike my own father even more. I did not understand how a good and caring person should die while they were still so young, and I saw my dad getting older and kind of bitter with that old age. I spent as much time with the few friends I had, out of my house, and ignored what my father said. I felt he was a bad influence who would often wake me up by slamming drawers and swearing while in the room next to my bedroom (the kitchen). Our relationship was barely existent.

My dad had occasional moments where he would try to show love. We went to a few sporting events. He would be nice to me then and I would constantly question if his apparent affection for a now, older me was genuine. It was very confusing that he could be so nice to me when we were alone and yet we could fight so terribly in front of others. I said plenty of things I am not proud of including telling him I hated him. I was not a nice person to him, but all of the emotions I felt towards him had been building up for years. I could NOT be nice to him. I would feel ill at the prospect of doing so, because I had so much rage and resentment that I felt for him.

When I came out as “liking girls” at age 16, my life grew harder. The person who was supposed to love me most, who rented a womb to me for nine months, became cruel and unpredictable. She would pin me down (I couldn’t walk but I could wiggle and thrash) and do terrible things to me. These are things I was so embarrassed to even talk about. I remember screaming at the top of my lungs for someone to help me and get her to let go of me. I hated my dad for letting her do this to me. I am more understanding towards my brother who seemed to have an attitude of, “at least it’s not me”, but my dad could have, should have done something.

Sometimes he would help her, by holding me still to get it over with, and he would have sympathy in his eyes. However, he never did stop her. I would cry and scream and then I would have so much rage after. I would scream at the top of my lungs and call them all terrible names. Then I would get in trouble for that. Nobody knew what they were doing to me, so other family members and family friends would just see my “rages” and assume I needed help or was just being a jerk.

I was not a pleasant person to be around. I acted out at home, at school, and pretty much everywhere I did not have to put on my “happy face.” I could pretend to be happy. Nobody knew why I was acting out. I went through a lot of bullying at school. I ran my mouth a lot, in answer to this bullying and that made me even less likable. I figured I deserved it anyway. My family would say I was being ridiculous. Everything was always my fault. I blamed myself as much as everyone else. My life continued to spiral out of control and my only saving grace was the GLBT group on campus at Bowling Green State University. For the first time, someone, anyone was accepting of me regardless of who I was, what my background was or who I loved.

My dad took my coming out with mixed emotions. After I came out to spite her, she outed me to my dad. At first, he was furious. I was supposed to be the only girl. What did I mean there would be no white wedding (with me in white/in a dress, marrying a guy)? What did I mean I liked to date girls? After a week of barely talking to me, it became the subject we did not bring up, though out of nowhere we’d be watching something on television, he’d point out how hot a girl was and ask my opinion. This was shocking to me the first time he did it, but it was much better than the abusive reaction I was receiving from someone else.

I stumbled over my relationship with my dad, from then on, for the mere fact that he was still letting the abuse happen. I was so mad at him for that, but he was also becoming more accepting of my love of the feminine persuasion. One day when we were alone (we were growing to have a lot of those evenings as my older brother either hibernated upstairs or hung out with friends and as the other person in the house was busy playing Ms. Cleo) he asked me why I had to like girls. He was really sad. It became very clear to me that my dad did not understand why I had to be that way, and I tried to explain, as best I could, that it was not a choice.

I could see he’d lost something with the realization that I really did like girls. At first, he too thought it was just a phase, but as the months passed and I became more involved, attending events on campus like the GLBT dances, it dawned on him that this was not going to go away. We had a few more talks where he asked me to reconsider. He did not mind GLBT people, but he had a gay friend before that had made him uncomfortable (I do not really know the details), so the entire prospect of his kid being a part of this community had seemed like a personal diss to him. Once he realized this was not about him, and I truly did love women (though he did occasionally ask me how I “knew” and asked about my love life – which wasn’t his business – his theory was “you do not know unless you have sex with a man”) he would joke about women with me and we’d occasionally “check out babes” at the mall, the car show or other places he took me.

By the time I was 19, I was miserable. I was constantly harassed about being into women. I was told not to tell my grandparents as they would hate me. I was told not to tell anyone else in the family, as they would look down upon all of us. I wanted to bust the hell out of that closet completely. Most people knew at college. I told my friends, except for the ones I went to High School with, whom I was told would never like me or speak to me again. The rumor mill had started to swirl around my small hometown, since some peers from high school saw me actively participating in GLBT group activities on the BGSU campus. I knew I could keep it from my family, but I am from a small, Midwestern, semi-conservative village (not even big enough to be a town). I knew soon enough the jig would be up and I was gearing up to be ostracized.

The stress of further rejection in my hometown was overwhelming. I was stressed from that. I was stressed when I was forced to move back home to live in the abusive environment I’d managed to escape, albeit for a few months. I was stressed because she was trying to dictate every move of my life. She was trying to live vicariously through me, by telling me what to do and threatening me if I did not listen. I ended up exploding and saying terrible, horrible things in anger. I screamed and yelled as I was told to shut up so the neighbors did not hear me. Then, my brother was instructed to turn off my wheelchair, push me into the center of my bedroom and leave me there. The manual switch for my chair was down by my wheels, so I could not reach it. I was enraged. Not only had I lost my dignity, I lost my ability to move.

My brother did as told, and my dad did nothing to stop this. I screamed for them to turn my wheelchair back on, as I sat there, trapped in it, unable to touch anything; not my bed, my computer or anything. I screamed until my voice was hoarse, but nobody came to help me. As my red, tear-stained cheeks grew even redder with rage, I looked at my wheelchair. All I had was a metal watch around my wheelchair joystick. Using the sharp edges of the watch face, I began to slash at my wrists, violently. I kept making scrape marks but could not draw blood. As I sat there, I felt no pain. I began to feel nothing, but the desire to be dead. I wanted to die so badly. I thought it was my only escape.

As I whittled, marks began to form that looked almost like welts. Still, I felt nothing. So intent was my work that I did not hear her come in. She looked so smug as she confronted me about trying to kill myself. She, at first, threatened to call the hospital. I told her to do it. Maybe someone would put me out of my misery. That was not the answer she expected. She called in my father and had him sit there as she explained what I was doing. He seemed alarmed, but he had just retired from his job. Our insurance was in limbo for a few months, which meant we did not have any. She informed me I was lucky, because we didn’t have insurance, so no doctor could tell me I was crazy. It was then that I realized I would not be getting help.

I would have two choices. I had to either escape or kill myself. As a sense of reality struck me, the pain of what I did to my wrists hit me as well. It hurt and I do not like pain! I was so numb in those moments when I was slicing, but once I became more coherent, the severity of what I’d done to my skin hit me like a ton of bricks. I didn’t want to kill myself! It would hurt and I hate pain. It became abundantly clear to me that my only choice was escape. I managed to secure that by enrolling at Wright State University. I just had to get through five months (summer break) and I’d be home free, so I believed. I passed the time by getting a job, which helped me get out of the house. My dad would often take me to work and pick me up, so we had moments alone, where we’d actually talk and were cordial to one another.

Going to Wright State was great, but I was forced to rely on my parents for financial assistance where necessary. I was not old enough to be declared independent, and my dad made just enough to not allow me to get enough loans to pay for all my housing (my tuition was free). I did not really understand the loan process and let them dictate the moves I made, which was a mistake, because it led to quite a bit of debt. I also was not allowed to stay on campus over breaks unless I was doing something creative (like being in a film). Going home was a horror in and of itself.

The entire time, I was placed back under their rules and their control. They put me to bed so I went when they wanted. They got me up on their schedule. I was banned from talking on my phone with my phone line bought by me most nights, even though it was mine. I ended up having to sneak my phone to bed with me. This was often my only means of escape and connection to the outside world. I was used to making my own decisions, as I lived on my own at WSU and my PCAs (personal care attendants) would schedule around my needs not around what they wanted for me. The old rage started to bubble up again inside me and it wasn’t long before I was screaming, because I was mad and upset at the entire situation.

We had some really horrible fights. She also made a big deal about every little health problem I had. After their 25th anniversary party, upon which my father and I had a huge fight at the pre-party restaurant dinner, she refused to let me return to WSU because my edema was looking like edema in my feet. It was a common problem given how often I used to have to hold it without going to the bathroom when I lived at home. Sometimes I could only go once or twice a day. She called up my doctor, who wanted to err on the side of caution, but I knew it was nothing. Still, unable to drive myself back to WSU I was left at her mercy.

The fight at the restaurant occurred after a lengthy session where she held me down, abusing me in the way I hated most. She was a pro at getting me alone and torturing me until I screamed and was enraged. Still pissed off by the time we went to eat, I called out my father, telling him what a jerk he was and saying a lot of other, horrible things. I laughed at him for it, and everyone attending the dinner was shocked and horrified by my behavior, but so much anger had bubbled up in the few days I was forced to be home and I was so sick of him letting her abuse me. I lashed out at him with ferocity.

Of course, it made me look absolutely horrible. I was so embarrassed about the abuse I was enduring and she knew that. She knew, at this point in my life, I would never confess so she would get away with it and I would forever look like the enraged demon child my family believed I was. That was exactly what had happened. Everyone told me to apologize to my dad, but I wouldn’t. They did not know, but I did. I was so mad that he could be a spectator to this abuse and let her get away with it. I think I was even more furious with him than I was with her. By now, I expected her to be like this, but he had moments where I believed he cared about me, and yet he would not defend me by stopping her. This meant I was once again the bad guy and my family was receiving pity from others, because they had to deal with such a horrible child like myself.

When I was supposed to go to the doctor, she had messed up the times. I was mad because my feet were fine, but she insisted I go. My dad took me and had to drive me right back home, as the 11:00 AM appointment was really at 4:00 PM. When we got home I was in a bad mood. Nobody came to the door after five minutes, to let me in the front door and I started yelling. She was furious and yelled at me when she finally let me in. Apparently, my dad had collapsed. Apparently, I should have known and been patient. I, of course, felt bad. Still, I am not a mind reader, so I did not feel it was fair for her to be mad at my impatience when I had no idea what was going on.

My dad was rushed to the hospital and the prognosis was not good. His heart problems had caught up with him and he was almost 100% blocked. He was in congestive heart failure and was too old for them to do anything about it. I was 20, and I was sad. I felt bad for the fight two days before, and blamed myself for adding to his stress. I was still mad at him, but did not want him to die. My brother took me to the doctor and the foot problem was nothing, so I was allowed to go back to WSU. By now, my grades had slipped and I went back knowing my dad was going to die. I saw him a few more times before he finally did, two months later, and we kind of made our peace, but his death opened the floodgates for all the pain I felt and the pain he had caused in my life. I was a wreck.

At WSU, I went to therapy. As I recounted stories about my family, for the first time someone listened. For the first time, someone said, “they did that to you?” For the first time, I was told it was not my fault and what was being done to me was abuse. I was finally able to talk about the abuse in detail, though even today I still feel twinges of embarrassment at the thought of the unconventional abuse I received. I started to heal. I have read a lot on abuse and coping with it and now I try to help others in similar situations. I want them to realize life does get better. I want them to realize they can escape and move on to live productive, full lives. I want them to know they are not alone.

In the summer of 2002, I started going by Dominick and having close friends call me that. My dad had been dead a year and after a summer alone with her, I had vowed never to return home again if I could help it. I did only once more, that Christmas, where I was insulted for falling in love with my partner of almost a decade today; so much that I knew I could never go back to that environment. With the help of Ash, the first person I told about going by Dom and being a transgendered person, I was able to research what being transgender was. With her supporting whatever I wanted I found a way to finally identify myself that made sense to me. Ash stood by me and made my decision to transition easier, because she made it clear she would love me no matter what I decided.

Today I often wonder if my dad would accept me as Dom and if we could come to an understanding. I wonder if had he not died, whether I would have been able to forgive him for letting her abuse me. I wonder if he would even admit his part in it, because she only admits it when she thinks we’re alone, by saying I got what I deserved. When others are around she seems to have no idea what I’m talking about.

Regardless of what my dad would think, I’d still be who I am today. This is who I am PROUD of being. He could accept me or not. If he would is anyone’s guess, so there is no use speculating. I am happier than I ever have been, living a life of truth. If he was a true dad he would love me, accept me, and want me to be happy. I’d like to think he would.

My dad is a part of my old life, and a part of a lot of horrible memories. There are some good in there, so I try to hold onto those instead. I am proud of my Polish heritage and love my wide array of cousins I have thanks to him. I am grateful many of us have been able to find each other on Facebook and reconnect. However, that old me is gone. That old me has moved on to greener pastures. To talk about my dad and think about my dad is to step back into that life and remember all the sadness and anger I endured. Instead, I want to move forward.

I do not speak much about my dad, because I have moved on and he has been gone a decade this year. I think he would want me to move on and have the courage to leave the abuse behind me; courage he never had to stand up to her and stop it from happening in the first place. I can only imagine today he’d be proud I had the courage he never did, and that is the only thought I really need to have when thinking about my dad. I’d rather focus on the positive, because thanks to being honest with myself, that is exactly what my life has become…positive.

Technorati Tags: family, relationship, father, parent, abuse, kid, yelling, suicide attempt, hurt, death, dead parent, story