Live Inexpensively or Die

Originally posted on April 7, 2012 by disabilityrightnow




by Clint Berger


Early news stories about George Hodgins’ murder stated the “views” of his mother about the services that were available to help George and people like him, or the alleged lack of them. That statement was later refuted. George Hodgins had been involved in at least one organization that provided him both the help he needed and social interaction in his community. His mother took this away from him, saying that she wanted to find something better for him, but she did not see this through. She instead decided to take his life and her own.


George was affiliated with the Morgan Autism Center in San Jose, California. He was there for schooling and to learn life skills. His mother pulled him out of this program, but did not actively pursue other opportunities for him as she said she would. A representative of the Center stated that they had services available for adults as well as for children. George would have been eligible for adult services at age 22. Instead of letting him continue working with the Morgan Autism Center, Elizabeth Hodgins had something else in mind. George would have learned to be more independent, and he could have made friends and become more active in his community. The opportunity for a full life was stolen from him, and then life itself was stolen as well.


Elizabeth Hodgins used a supposed lack of services for her son as “justification” for murder. To say that this is wrong is a gross understatement. Some of us legitimately do not have services available and we are still alive. Often, the “burden” of raising a disabled child is heavily financial. This is likely one of Elizabeth’s possible motives for George’s murder. We will never find out the true cause of his murder, but it is possible that the monetary costs of caring for George were a factor in her twisted thought process. We will never get the truth, nor will we know the truth of what happened to any of the others whose names were read at the vigils. Since the vigils, more of us have been murdered, and with each of these murders, we all wonder when our voices will be heard.


Money can be tight for families of people with disabilities, but it can be used to control and abuse us; this is a concept and a lifestyle that is very familiar to me. Every day of my life, I get constant reminders of how much it costs for everything from the electric bill to my student loans. I am not on any federal or state assistance, and I am unemployed. I have a caseworker assigned to me who is supposed to be providing services similar to those available to George, but my calls are not returned. My needs are not treated as needs, and I am told I live too far from public transportation to be able to use paratransit. I essentially have nothing available to me right now; and that is why it is so upsetting that someone would lie about their child’s potential to evoke sympathy for themselves. George was working with the Morgan Center, and there are no accounts that justify his mother’s assertion that he was not receiving proper support there.


George’s case brings so many questions for anyone with disabilities. The question at the top of this list is something to the effect of, “How long will they let me live before my life is taken?”, but this is not the only question we have. The next question we all ask ourselves is “how will I be independent?”. We all struggle to be as independent as possible, but many of the government and nonprofit agencies that are established to help people with disabilities are actually geared toward helping their families instead. They are supposed to be helping us, but even they overlook us. George needed help. He needed to remove himself from the family that was supposed to be helping him. Even the director of the Morgan Center, Jennifer Sullivan, expressed sympathy for George’s family on her blog for the center. Yes, there are other family members mourning George’s untimely death and his mother’s suicide, but they likely don’t see Elizabeth as a murderer either. There comes a time when the focus needs to change. Start supporting people with disabilities directly. The families need support, I cannot deny that, but the best support for the family is education. Teach parents how to care for their children without controlling them, especially as they reach adulthood.


Many of the services and donations to these families are not directly monetary, but money is the key, everything that is needed and provided has a price tag on it. Most parents of children and adults with disabilities seem to ask, at some point, “when will my son or daughter be independent?”.The answer is that your loved one will be independent when services are properly administered, when the money meant for them is actually in their hands, and when they are treated like human beings and not like burdens on their families and society. Until we have money in our own pockets, we will not be seen as “productive members of society” and our opinions about our own lives will continue to be ignored. When the money intended to help us is controlled by our parents and caregivers, it allows and encourages them to control, abuse, and even murder us. We have dreams of independence beyond removing the “burdens”, but we also have voices that need to be heard. George’s voice can no longer be heard, but mine can and will be, as will those of my colleagues. We are more than a line in a budget, we are human. Focusing on the families is another way to talk about us without us. I urge everyone out there who wants to help people with disabilities to focus on us, to let the help trickle down to our families. Help them by seeing our potential and helping us fulfill it.


If, after reading about George here and reading my own take on this aspect of our lives, you still question the idea that the focus is not on us, you need look no further than Youtube. The videos below are rather lengthy, but they do well to help me show that we as people with disabilities are not the priority in our own lives, even when people and organizations say they are trying to help us. These two videos depict a PowerPoint slideshow that gives statistics relating to the social, economic, and emotional impacts children with disabilities have on their families, such as the costs of care and time spent to care for these children. The parents in attendance are then given the opportunity to respond and tell personal stories. Many of these stories involve the parents explaining how they cannot go out to dinner, or take a family trip to the zoo like a “normal” family. The emphasis is on being a normal family, not on allowing the disabled children to live full happy lives, as it should be. Emphasizing the impact on the families and showing sympathy for parents and caregivers is enabling these families in their effort to control every aspect of their children’s lives, including, in cases like that of George Hodgins, when these lives are to end. Something is blatantly missing from these videos; that is the input from the children who live with the disabilities. If you wish to help us, start by listening to us.

A video on "Caring for children with disabilities in Ohio, the impact on families"

Part 2 of the video

Every time I see an Autism Speaks commercial, a little piece of my head explodes

(Originally posted on my tumblr account on April 9, 2012)


I am not autistic, but as a PWD, I see the commercials and the complete avoidance of the people (most often children) who are actually autistic. Most notable is the Tommy Hilfiger ad, where he says “I’m Tommy Hilfiger, and my family is affected by autism.”


He doesn’t even mention which member of his family is autistic like the others do. If they wanted to advertise and actually acknowledge the autistic people, they should let them star in the commercials (or at least give the opportunity to do so). If they completely reversed their strategy, they might be a slightly better organization. Of course, the true solution is to fund research more than these ridiculous commercials, the organization might be more credible that way. What they need to do is get someone like this “nameless” autistic member of Hilfiger’s family to star in the commercial….let them communicate “I am autistic and this is how it affects me: …”(I’m choosing not to be specific here because I don’t want to mislead or offend anyone). Only after they have done that should they even consider having a famous person jump in and tell you who they are and that it’s their child ACTUALLY IN THE COMMERCIAL.


I’m not autistic, as I said, but avoidance of PWDs and the whole “focus on the family” idea just drive me insane. Focusing on families means giving the parents and caregivers the aid that should actually be directly in the hands of the PWDs who need it. Focusing on the families means giving those parents and caregivers the opportunity to control and abuse us. It’s more than opportunity though, it’s somewhere between an opportunity and a command. All disability-related organizations need to realize that donating to the families will not help us, it will kill us. If the money, equipment, or services are in the hands of the PWDs, it will make independence more possible for us. If you donate to organizations like Autism Speaks, all you’re essentially doing is making yourself feel good while perpetuating many negative stereotypes, including the one that says PWDs can’t be independent.

Both Teams Win? Not So Much

There's a video going around of a teen with an intellectual disability scoring a basket in his high school basketball game. His name is Mitchell Marcus, and he had served as the team's manager for most of the season. The coach decided to put Mitchell in to play near the end of the team's last game. There are so many problems with this, but it really comes down to one thing, Marcus is just trying to live life to the best of his own ability. He's not here to inspire anyone. The coach, however, does not understand this. In his interview, the coach said he was prepared to lose the game "for his moment." Their team won, but not before a player on the opposing team blatantly passed the ball to Marcus so he could make a basket. That's not basketball. That's not how you play sports. You play to help your own team win.

When Marcus was interviewed, he (apparently) said he was just happy to wear the uniform, even though that came from the mouth of the reporter, not Marcus himself. That should be true of any athlete at any level. If you're not proud to wear the uniform you are wearing, you either stop playing, or in the professional ranks, request a trade. In any case, they called these events "sportsmanship". This is not sportsmanship, this is patronizing. Was Mitchell Marcus happy to play in the game? He was. Was he happy to score the basket? Again, it's fairly obvious he was. Did anybody bother to ask him about HOW he scored that basket? Not at all. Any other player on any other team would be disappointed in themselves missing so many opportunities before that shot, and it's fair to assume that he is no different. That's right, I said it, he is no different. He joined the team, albeit as the manager, to be a member of the team, and probably to make some friends. If he is aware that he would have trouble keeping up with the competition, he wouldn't want to play just to be left in everyone's dust. Would people applaud him for knowing his own limits? I don't think so, but they shouldn't. Nobody asked him about his opponent who blatantly ignored basic basketball strategy. You don't want to pass the ball to an opponent. No exceptions. If he has the basketball knowledge the coach referred to, he would know how patronizing it would be to have these events unfold as they did and to be the unwitting center of it all. I have no doubt that Mitchell Marcus was happy, but I also have no doubt that he was not intending to inspire anyone. He was just trying to be a normal teen, be involved in his favorite sport (even if he couldn't play), and make a few friends, and there is nothing wrong with that. What's "wrong" with the situation is all the TV cameras and the opposing player doing what he did. I wonder whether or not this video would have gone viral if any one factor changed. If Marcus was not disabled, the opposing player is immediately ostracized. If he had made one of the shots he took under normal basketball circumstances, is this "news"?

It's almost as if the news story isn't about Mitchell Marcus at all....until people want to say how inspiring he is. The story is about all the well-intentioned, yet misguided people around him who literally set the stage for him. They all want to show how "nice" they're being to the disabled kid. They want the glory of being kind people, but when disabled people see this, it has the opposite effect. If you want to be kind to anybody who has any sort of disability, don't patronize them like this. Don't act as if "in his mind, the championship is on the line" when in reality it's not, and don't act like that staged basket won this "championship."

There was a similar situation back in 2006 which involved an autistic high school senior named Jason McElwain. His story gained nationwide notoriety when it aired on ESPN, and some things were still taken too far. Some media outlets even labeled him as a "high functioning" autistic which is problematic on another level that I won't discuss here. However, in McElwain's case, he scored all his baskets during the regular course of the game and under normal circumstances. He scored twenty points in four minutes on the court, including 6 three-pointers.  A streak like that will reach the media even if the player has no disabilities. He made himself newsworthy by playing well, not by other people setting him up, and not for simply living life to the best of his ability while having a disability.

People without disabilities aren't in the news for daily activities at any age, so why is Mitchell Marcus' story different? It's different because people want to make a big deal about being "nice" to someone who has a disability. It's different because people are wrongfully inspired by things like this. It's different because the majority of people don't see how patronizing it is. Nobody wants to acknowledge that this should not be different at all. That is, nobody without disabilities wants to acknowledge this. The disability community would like to see "news" like this disappear, and I agree with this sentiment. We are not here to inspire anyone except ourselves. We don't want fame and glory for living our lives, and especially not for staged acts of kindness and "sportsmanship". Nobody should be exalted for respecting us. Even the opposing player who threw Marcus the ball said "I was raised to treat others how you want to be treated". This is not how to do that, unless he wants to be inspiring in the way that the disability community abhors. We're not inspirational people, we're just people, and we deserve respect just like everyone else does.

I'm 26, and I'm Tired Too...

Inspired by/response to I'm Tired, by Robert A. Hall, mistakenly attributed to Bill Cosby. 

I'm tired too. I have cerebral palsy and chronic pain caused by osteoarthritis. I just received my college degree after eight years of fighting with the university. I've been trying for at least the last four years to find work without so much as a callback for an interview. I'm tired of the cycle of "I can't get work because I have no experience, and I can't get experience because I can't get work." I'm tired of people calling me lazy for it. I'm tired of being denied benefits because people without disabilities tell me that I am not disabled either, especially after living my entire life and having my disability affect me several times a day.

I'm tired of disability benefits being called "benefits". It's not a benefit, it's a necessity for people like me (and I can't get it). I'm tired of people telling me what I can and cannot do, or what I should and should not do. Everybody says "just go get a job", but if it was that easy, none of this would be an issue. I'm tired of hearing that going to college means I'm not disabled. I'm tired of people telling me I'm attempting to take advantage of the system that was put in place for people like me. I'm tired of being denied government help, tired of lawyers telling me I have no case against the government. I'm tired of dealing with employment agencies that only exist because discrimination is constant, even though the government and these agencies will never admit it. I'm tired of getting criticized for not responding to people fast enough, tired of calling people to make sure they are doing their jobs, and tired of being an option for these people when society makes them a necessity for me. 

I'm tired of people coming to me to complain about their jobs when I don't have one. I don't mean everyone, if you're being harassed or if working conditions are subpar, those complaints are valid, but "I hate working 9 to 5" will draw nothing more than "give me your job, I need it" out of me. I'm tired of hearing about the bad state of the economy when people like this have jobs. I'm tired of people questioning a work ethic that I haven't even had the opportunity to show. "Make an effort", "be more motivated", "change your attitude", I'm sick of all this. I'm tired of people telling me to contribute to society when I can't even get out on my own. 

I'm tired of people telling me when I'm disabled and when I'm not. Maybe things like Medicaid and Social Security payments are called "benefits" because it's become obvious that people take advantage of them. I'm tired of people who reach for their Medicaid card and have an iPhone fall out of their pocket; people seem to think I'd use the payments the same way, but there is zero chance of that. I'm tired of people determining my needs based on my family's income. People need to stop believing I can be treated like a child my whole life, I'm already too old for that. 

I'm tired of telling people all this stuff, tired of them not understanding me and THEN criticizing me. I'm tired, but as long as people lump me in with those who deserve the criticism, I can't give up. Now I'm just tired too, I have to stop here and hope the message is clear.

I Can't, A Polarizing Phrase

                I’m 25 years old, and I can’t tie my own shoes. It’s not because I never learned, or because I haven’t tried; It’s because I have hemiplegic cerebral palsy. It never fails, when someone without a disability sees someone with a disability struggling with something and giving up, they will likely say something to the effect of “try harder” and the person with the disability is likely to say “I can’t do that”. When someone like me says “I can’t”, no doubt, someone will say “you can do anything you put your mind to.” People have tried to teach me to tie my shoes ever since, as well as other similar mundane-seeming tasks that require two hands. The calls of “try harder” or “don’t give up” never cease. Sometimes it’s best to be the bigger person, to admit when you need help. That doesn’t mean people with disabilities should feel defeated, it just means we know our limitations.

                Perhaps the worst thing about these people with the “everything is possible” attitude is the moment when they finally realize that they were wrong. They will still try to motivate us to no avail, but then they will also begin to tell us that we can’t do something. It can be simple everyday things like “you can’t lift that box” or something as big as “you can’t be a parent.” Either way, they are attempting to use motivation as a form of control. If they wanted to make their point in one sentence, it would be “You CAN’T be independent.” Part of independence is knowing when to ask for help.

As I’m writing this, there is an infomercial on TV for the “Insanity” workout, similar to P90X but it’s a 60-day program. This is a perfect example. I can’t do this workout. Try to motivate me all you want, I don’t have the physical capacity or ability to do these exercises and I know I’m not alone. I know people with disabilities are not the target audience here, but it does help me explain how people push us past limits that they don’t acknowledge in the first place until it is convenient for them to do so. People tell me all the time “just push yourself a little more every time; you’ll eventually be able to walk ten miles.” How do you know I will be able to do that? Do you know how my body works? Do you understand the pain I feel from living with osteoarthritis every day? Most likely, the people who say things like this have absolutely no idea what my limits are, nor will they know the limitations of anyone with disabilities.

                Saying “I can’t” is not admitting defeat, it’s not admitting weakness, it’s admitting a natural limitation and being logical. When someone without a disability says they can’t do something, provided they are over the age of, say, ten, people will believe them. People without disabilities are allowed to have limitations but we are not, apparently. We have to be the extremely optimistic, inspirational story for everyone to gawk at and say “look at them, they didn’t give up, you shouldn’t either.” I am not that guy. Don’t look at me and say that I never gave up, because I have. I say “I can’t”, and that phrase will never leave my vocabulary like some people believe it should. What I encourage is that we try, and that we realize when something is impossible or when we need help to accomplish something. I do encourage everyone to try to exceed their limitations, but to do so safely. I encourage you to stand up and say “I can’t” too, but don’t feel defeated by it, feel accomplished that you have tried. It is a very powerful phrase though. I recommend that you only use it as I do, when your options have been exhausted and your limit has been reached. Say it like you mean it, and only WHEN you mean it. I hope I am not the only one who has this view of “I can’t”. I am who I am, and I have limitations. I try not to let them stop me, but they will, so maybe it’s better to say I like to keep the effect of my limitations to a minimum.

                Perhaps the best way to end this post is to say I can’t have people in my life who don’t accept this part of me. 

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Where's the national holiday for us?

Martin Luther King, Jr. was born on January 15, 1929. Most, if not all of us learn about his contributions toward civil rights in school. We've heard the "I have a dream" speech at least once in full. His accomplishments should be celebrated, but my question is, where is the disabled equivalent? Mr. King's civil rights movement was based on race, and it was successful, but there are still many of us who aren't treated equally. I am a member of a minority that isn't acknowledged by the government. As far as the United States government is concerned, I'm a white male, but that doesn't begin to explain my identity. I am a white male who has disabilities and a chronic illness. The powers that be in this "great" nation have told me, through the Social Security Administration, that I am not disabled, that I don't qualify for federal disability benefits.  The fact remains that the government shouldn't determine whether or not I'm disabled. I'll admit that they have to be there to determine the difference between legitimate disabilities and the hypothetical and extreme notion of "I got a paper cut at work, now I want government money". I am a minority. I didn't acquire a disability on the job, I was born with mine. People don't look at me the same way as they would look at somebody who lost a limb in a construction accident. "Well he was working hard when he became disabled", Why does that make him more worthy of "benefits"? The more important question, perhaps, is why is disability determination always in the hands of non-disabled people? In government and in standard job placement, somebody without a disability is most likely, but not always in charge of determining who gets benefits, or who gets accommodations on the job. I've been discriminated against, and the "perpetrator" of the discrimination was a lawyer who works for the state! Because she had a family member who has the same disability I do and was successful with it, she seemed to cross it off the list of conditions that "count" as disabilities. Maybe someday people will believe me and others like me when we say "I have a disability" or "I can't do that." Mr. King had a dream, I do too, and I don't think I'm reaching too high.

My dream is that I no longer have to be nervous about applying for a job or for social security. My dream is that people will acknowledge that I am the authority on how my disabilities and my chronic pain affect my own life. I hope that the phrase "with or without reasonable accommodations" is rewritten in employment applications. If I need an accommodation to perform my job on the same level as my non-disabled peers, I should not have to worry about a supervisor saying to me "well, you said you could do the job with or WITHOUT accommodations." My dream is when I say I can't do something, or I need help, that people believe me, help me and avoid lecturing me about a positive attitude. Part of being independent is knowing when to ask for help. My dream is that if I say I'm "out of spoons", people will understand and respect it.

Maybe we should have our own "version" of Martin Luther King Day. Maybe it should be Christine Miserandino Day. Christine Miserandino is the author of "The Spoon Theory", an autobiographical account of life with Lupus. The title came about through a conversation she had with her friend about energy management, and you will understand what "out of spoons" means after you read it. Today, she has a following that includes people with all sorts of disabilities and chronic illnesses. Those of us who subscribe to The Spoon Theory identify ourselves as "spoonies". Spoonies are people too. We may need accommodations to have a career and live our lives to the fullest, but that doesn't mean we are second-class citizens or that we are less entitled to life, liberty, and the pursuit of happiness.