The Hero Complex

            Being a new disability advocate, I find myself continually plugged into various publications. One publication I get news from is the American Association of People with Disabilities. Every week they put out a handy newsletter entitled Disability Weekly.

In a recent issue in a segment called In the News, they had a story about a mom who wrote a somewhat controversial piece. Her piece was entitled My Child with a Disability is not My Hero. As the title suggests, Miss Sarah Sweatt Orsborn asserts that disabled people but disabled children are not heroes. At first glance, even I, the non-politically correct writer, that I was taken aback. However, after looking further into Miss Orsborn's premise, I have to say I agree with her.

The premise of the article is quite simple. Orsborn suggests that the term can be more harmful than positive.  From my perspective, as a disabled person, I cannot help but agree. Every time I hear  "Oh, you're so amazing," or something of the like, I cringe. This occurs even when I listen to it from my own family. How can I be fantastic for doing such everyday tasks such as getting up in the morning and going to school? Every time someone comments on these lines, I feel like it diminishes me as a person.

I am not saying that complimenting someone for his or her accomplishments is a negative thing. I am realistic and understand that we all have egos that need a little inflating now and then. The point that Miss Orsborn and I are trying to make is that complementing somebody is fine but merely complimenting them because of the obstacles they face diminishes their self-worth and the work they have accomplished. Let me put it another way; it is like saying that we did not expect you to set the bar so high for yourself because you have this infliction. That not only causes a problem individually, but it results in a group problem.

What is that group problem? Disabled people as a whole have always expected less of themselves because society, in general, expects less of them. If we begin this second-class citizen in the doctor nation at an early age, it is no wonder disabled people set the bar so low for them.  I am a 27-year-old person with cerebral palsy who just graduated with my master's in education. However, I did not graduate with teacher certification, even though I had a 4.0 cumulative grade point average in the program. So why am I not a certified teacher, one may ask?

Simply put, I listened to society when they set the bar so low for me. Some at my school thought it was so amazing that I was getting my masters, but they saw me as too disabled to teach in a classroom. Even though it was not said directly, this was an example of the hero complex. It's so amazing that I got so far; they did not expect me to go any further and were unwilling to invest in me to help me do so. I should have done not settle for such low standards, but I did, and I have learned from it. It has helped me develop my voice as a disability advocate. It has also taught me that as good intentioned as parents are, or even family members are when they say to a disabled child, look how much you have accomplished with what you have had to go through, this has to stop.

Based on their accomplishment, judge their achievement, don't put a star beside it with a little footnote that said he or she had a disability too. Changes in culture and society do not start in Washington in the political arena. They begin with everyday people. If disabled people and those who support them want to change the way disability is perceived in this country, we have to start with ourselves. It is time that disabled people's expectations are just as high as everyone else's because we may have visible or not visible obstacles, but that doesn't make us any more or less of a person. 

Lessons Learned: Self-Reliance

So I didn't write a lot in 2014 yet, but I promise that will change. This posting will be my 40^th blog. It is amazing what this blog has grown into a little over nine months.

            Nine months ago, I was angry and bitter and didn't know how to deal with it. They say life has a funny way of working out. I can't say that I would say that in nine months, I found my voice or at least the beginnings of it. As this blog says, I have learned a few things over the past little bit. I've written about comedy, I've written about political issues, and I've written about disability stereotypes; however, this blog will be a little different.

            Maybe it's because of how I was raised, but I have developed a fighter spirit that is both a good thing and a bad thing. As I sit down to write this post, in fact, I still remember the latest fight I had with my parents about being self-reliant. Without boring you with the gritty details, let's say we disagreed on how self-sufficient I should be at this point in my life.  My fight with my parents had nothing to do with a disability, at least on the surface; however, it got me thinking about a disability community problem.

            I've read a lot lately since graduating from my master's program in early December of 2013. I don't know whether it was intentional or not, but many titles have been related to making one's destiny. The last book I finished, I am Malala, was a highly publicized book about a girl shot by the Taliban in Pakistan to speak up for girls' educational rights. That book not only blended history and culture, but it struck me on a personal level. The circumstances Malala had to overcome put her in extreme danger every day. Regardless of that danger, she still stood up for what she wanted.  She knew no one else was going to give it to her unless she proves herself.

Similarly, A Bold Piece of Humanity, by Bill O'Reilly, discussed the controversial commentator's belief system and how he had come to reach those beliefs. While some of Mr. O’Reilly's political views may not sit well with some, the striking thing about this book was that like Malala; he did not rely on anyone to hand him success. No, he just took it.

            What does this all have to do with disability, one might ask? Well, it is simple. I've noticed lately, and I include myself in this generalization as well, that most people with disabilities let external forces control their lives. Often they feel trapped by circumstance, so we do not complain when our aide care is sub-par or something doesn't get done in a typical fashion because we are disabled. No, we accept it as our reality. Well, the above two books, along with something my father has been trying to tell me for forever, have finally sunk in.  Hard work isn't easy. I will use a parable from a well-known book for those of you who need it put simpler. Whether or not you believe it that Jesus of Nazareth is God as I do, the Bible does have one exciting thing that everyone can live by. Give a man a fish, feed him for a day, teach a man to fish, you feed him for a lifetime. This is not a wealth criticism or even a social criticism; instead, in this case, it is a disability criticism.

            I am criticizing those like myself in the disability community who often let their circumstances define their lives.  Yes, our lives may be challenging, but our obstacles are no different than anyone else's. We are no other than a single mom of four that I know who busts her ass every day and sometimes goes without to help me and make her kid's lives better. We are also no different from a 49-year-old man who goes to work every day and doesn't smoke a day in his life but ends up getting cancer at 50. He still must get up, go to chemo, and move on with his life. We are no different from my Dad, who was perfectly healthy a year ago and is now fighting every day to keep his spirits up and keep moving towards his retirement dream. I know that was long-winded, but I do have a point.

            Disabled people think that because we rely on other people so much, whether we have a physical or mental disability, we are not in control of our lives. I'm here to tell you that our lives are what we make them, no one else.

If we do not have much physical control, then we can demand high expectations of those who do have biological control over our lives. Disability is not a limit, just a challenge. Quit letting it limit you and start challenging it. Your experiences will be better in the short term, and the world will be better in the long run. 

 

Aide Care System; The Hurtful Loop Holes

 
So the New Year is just fifteen days old, but already I can tell that this year will be different. That being said, I must write about a significant issue that has consumed my life for the past six or seven hours. Today I was informed by my personal care agency that one of my care workers could not work due to certain issues. On the surface, this seems like a non-issue, but it turned out to be quite a large one.

            For those that don't understand the aide care system, let me backtrack a little. I'm not aware of whether I have mentioned that I live by myself in previous blogs. I live in a small college town in the Northeast, which has a college that caters to physically disabled individuals; however, college services are only available if you live on campus. For the past three years, while completing my graduate work, I have chosen not to live on campus. Along with that choice comes several challenges that have nothing to do with academics.

            In the state I live in, there are three categories of options for those disabled people who do not wish to live with their parents. One can either live in a nursing home, a group home, or independently using what is known as an independent living waver.  Although I have chosen the third option, the independent living wavers, let me briefly outline the other two options before going into my choice.

            There are those outside the disabled community, and even those in the disabled community that has preconceived notions about what the nursing home or group home setting would be like. However, some of these perceptions are misinformed. There are nursing home and group home environments that are very restrictive. In the typical group home or nursing home environment, an individual pays rent with their disability check or through a family member, trustee, or guardian. The amount that the individual pays is used for various purposes, including housing costs, daily meals, and aide care costs. In most situations, residents are provided with three square meals a day cooked by the staff. They do not have to worry about their care needs, not being met because there is always staff available.

In some cases even, individuals are given a portion of their SSI or SSD check back to spend as they wish. Critics of this system suggest that the care quality is not always up to par. Often these facilities are either understaffed, poorly funded, or a combination of both. While the residents do not have to worry about their care needs being met, their care needs are often completed to the bare minimum, and extras such as specific grooming tasks may be neglected or done in a half-assed manner, if at all.

            The second option is a version of the group home/nursing home, which I like to call the group house. Personal care agencies often run these, and they are places where two or more individuals with disabilities or physical care need to share a residence. It is not like a group home in the traditional sense in that there are not 30 to 40 residents. Instead, these types of environments typically house three to eight individuals. Three to five attendants usually staff these facilities. These facilities provide the best of both worlds; in my opinion, however, they are limited in that they have not yet become the norm. Usually, people are forced to choose between a nursing home and the option I chose.

            I chose to live on my own using the independence waver. The waver in and of itself is a good idea, but it needs some serious retooling to be effective. There are two categories on the independence waver; one can either be a consumer who hires their aides, thus engaging in participant-directed care, or one can use what is known as agency model directed care. I know I have long explained the problem than usual, but I feel this is necessary to explain the problem I had earlier. I have tried both participant-directed care and what I thought was agency model directed care. I have found that in theory both of these systems are good and well designed but the practice is much different from theory.

            As a disabled man, I still cannot understand why a system designed in theory to help make me independent in practice takes every shortcut to limit my independence. Recently through no design of my own, care workers have either been told they can't work for me or have chosen not to show up for mandatory training activities. I had been with participant-directed care in the past, and I purposely switched over to the agency to avoid this issue. Still, today I get told that I am a consumer delegate, so it is not the agency's responsibility to find me coverage in the case where they terminate a worker of mine. Granted, they are doing their best to help me out, but I must say that I am angry at the system on principle at the writing of this article.

If a company declares itself a personal care agency and you go into a company with the impression that they will cover your gaps when necessary, it should be the agency's responsibility to fulfill that duty.    I understand that I came into the current agency that I'm with, with my aides from other companies. Still, I believe that once those aides were forced to undergo training with the current company that I'm with, that company should then assume responsibility for them. I will not throw the current company I am with under the bus anymore except to say that yes, they are within state laws to do what they are doing, but I think it is morally appalling that such arguments have to occur. 

The labels and terminologies used within the aide care industry are set up not to benefit the service consumer but provide as many loopholes as possible. The system designed to promote independence instead creates much more stress and puts unnecessary burdens on individuals in need of care. Rather than focusing on what they can contribute to the world, a large portion of the disabled population has to spend a great deal of their time contemplating whether or not they are going to have the necessary services. Throughout the whole system, in general, not just in my situation, individuals are not willing to take responsibility for their part in the process. Instead, they want to pass the bucket so often that the disabled person gets discouraged and stops making noise.

I'm well aware that this writing piece may ruffle feathers in the disabled community at all levels. However, it is time for a change. Disabled people should not have to be limited to three bad choices. The second choice for living independently needs to be more widely available: the group house setting that I spoke of earlier.  Secondly, parents and supporters of the disabled need to put aside their preconceived notions of wishing that disability personal care was perfect. Perhaps if such group setting such as nursing homes and group house settings were not stereotyped and vilified, both of these systems could be improved. Finally, the state systems need to be federalized when it comes to the independence waver. Usually, I am not a big supporter of the massive federal government; however, state agencies have no uniformity. A majority of agencies will find any loophole to put the burdens on the consumer and not themselves. I understand that the personal care industry is not the most desirable field, but if you were a company in charge of your employees, you could not let them control everything. I understand that the personal care aide is a vitally important person but giving them too much control creates gaps in care and loopholes that need to be closed. Overall, for a system that started as a good idea, the personal care system needs to be looked at too closely, no matter what type of care one is discussing. Unique care should be freeing, not limiting. 

Come on America: Those In Glass Houses Should Not Throw Stones

So I didn't write a lot in 2014 yet, but I promise that will change. This posting will be my 40^th blog. It is amazing what this blog has grown into a little over nine months.

            Nine months ago, I was angry and bitter and didn't know how to deal with it. They say life has a funny way of working out. I can't say that I would say that in nine months, I found my voice or at least the beginnings of it. As this blog says, I have learned a few things over the past little bit. I've written about comedy, I've written about political issues, and I've written about disability stereotypes; however, this blog will be a little different.

            Maybe it's because of how I was raised, but I have developed a spirit of a fighter that is both a good thing and a bad thing. As I sit down to write this post, in fact, I still remember the latest fight I had with my parents about being self-reliant. Without boring you with the gritty details, let's say we disagreed on how self-sufficient I should be at this point in my life.  My fight with my parents had nothing to do with a disability, at least on the surface; however, it got me thinking about a disability community problem.

            I've read a lot lately since graduating from my master's program in early December of 2013. I don't know whether it was intentional or not, but many titles have been related to making one's destiny. The last book I finished, I am Malala, was a highly publicized book about a girl shot by the Taliban in Pakistan to speak up for girls' educational rights. That book not only blended history and culture, but it struck me on a personal level. The circumstances Malala had to overcome put her in extreme danger every day. Regardless of that danger, she still stood up for what she wanted.  She knew no one else was going to give it to her unless she proves herself.

Similarly, A Bold Piece of Humanity, by Bill O'Reilly, discussed the controversial commentator's belief system and how he had come to reach those beliefs. While some of Mr. O’Reilly's political views may not sit well with some, the striking thing about this book was that like Malala; he did not rely on anyone to hand him success. No, he just took it.

            What does this all have to do with disability, one might ask? Well, it is simple. I've noticed lately, and I include myself in this generalization as well, that most people with disabilities let external forces control their lives. Often they feel trapped by circumstance, so we do not complain when our aide care is sub-par or something doesn't get done in a typical fashion because we are disabled. No, we accept it as our reality. Well, the above two books, along with something my father has been trying to tell me for forever, have finally sunk in.  Hard work isn't easy. I will use a parable from a well-known book for those of you who need it put simpler. Whether or not you believe it that Jesus of Nazareth is God as I do, the Bible does have one exciting thing that everyone can live by. Give a man a fish, feed him for a day, teach a man to fish, you feed him for a lifetime. This is not a wealth criticism or even a social criticism; instead, in this case, it is a disability criticism.

            I am criticizing those like myself in the disability community who often let their circumstances define their lives.  Yes, our lives may be challenging, but our obstacles are no different than anyone else's. We are no other than a single mom of four that I know who busts her ass every day and sometimes goes without to help me and make her kid's lives better. We are also no different from a 49-year-old man who goes to work every day and doesn't smoke a day in his life but ends up getting cancer at 50. He still must get up, go to chemo, and move on with his life. We are no different from my Dad, who was perfectly healthy a year ago and is now fighting every day to keep his spirits up and keep moving towards his retirement dream. I know that was long-winded, but I do have a point.

            Disabled people think that because we rely on other people so much, whether we have a physical or mental disability, we are not in control of our lives. I'm here to tell you that our lives are what we make them, no one else.

If we do not have much physical control, then we can demand high expectations of those who do have biological control over our lives. Disability is not a limit, just a challenge. Quit letting it limit you and start challenging it. Your experiences will be better in the short term, and the world will be better in the long run. 

The Many Facets of Disability

 

Okay, so it's time I do some self-examination. It is time I will be honest with myself. A lot of this blog has been egocentric; I mean that not I am selfish in presenting disability. Instead, I have only focused primarily on those born with physical disabilities, like myself. However, a recent article and a 60 Minutes interview concentrate on broadening the spectrum in which I see things.

 

Several months ago, 60 minutes did a piece questioning where all the new incidents of disability claims had come from. When I saw this piece, part of me took offense to it, but another part agreed with it. There was a comment that many people on social security disability are lazy. However, after reading a recent piece published by the Los Angeles Times, I am forced to reconsider my view.

 

While it may be true that some on disability are there fraudulently, the piece by the LA Times broad to light a new point of view. Perhaps, the claims of disability arising because the overall make-up of the United States population is changing. Whatever the case may be, the disability system will never be perfect, but as the article, which I include below, stresses: it is time to change the system. We need individuals who do their homework on disability. We need to rethink how we approach disability from a financial and societal perspective before the disability fiscal cliff is reached in as early as 2016—just some food for thought.

 

 

 

Explaining the 'mystery' of where all the disabled are coming from

By Michael Hiltzik

 

The apparent explosion in Social Security disability claimants has provided endless fodder for critics of the program in recent years. They're favored the explanation is that the growth in the ranks of the disabled, from 250,000 new claimants a year in 1970 to nearly 900,000 in 2008, comes from fraud or laziness.

 

A new study by two economists at the Social Security Administration should put that to rest. After examining 36 years of demographic data, David Pattison and Hilary Waldron found that population growth, the aging of the baby boom generation, and the increase in the proportion of women in the workforce accounted for 90% of the increase in the disabled population -- and 94% of the rise in the more recent 1990-2008 period.

The rest is accounted for by an increase in the "disability incidence rate," defined only as the factor left after the others are accounted for. But as they point out, the incidence rate has been falling over the last 18 years.

RELATED: 60 Minutes' shameful attack on the disabled

The findings remind that disability is heavily influenced by age and that America's workforce aged rapidly as baby boomers got older. In 1970, some boomers were too young to be working; by 2008, some were beginning to retire. As boomers moved into disability-prone ages (think the late 40s through the mid-60s), the rate of disability in the population would have risen even if none of the other factors was present.

Pattison's and Waldron's work considers the importance today, as the disability program faces a near-term fiscal crisis. The exhaustion of the program's resources, which could strike as early as 2016, demands action by Congress. in the past, the underfunding of Social Security disability has been addressed by shifting money out of the program's old-age trust fund to shore up the disability fund.

Something better and longer-lasting is required this time. Still, that effort isn't helped by the sort of uninformed demonizing of the disability population retailed by people like Sen. Tom Coburn (R-Okla.). Coburn appeared on "60 Minutes" not long ago to wonder aloud where all the disabled people came from. If he only asked the Social Security Administration, he'd know the answer. But does he want to know? Nor does it help for "60 Minutes," National Public Radio, and other national news organizations to report on disability without doing their homework. With the publication of this latest study, they have one less excuse for getting it wrong.

 

 

http://www.latimes.com/business/hiltzik/la-fi-mh-disabled-20131202,0,7260770.story#ixzz2mj1sRMJV

Hey, Taxi!

Today an old industry comes into the 21^st century. New York City is one of the busiest cities in the world. It is the center of commerce and art mecca, and it often represents cultures from many parts of the world. Although New York is a place of change, one group that was not usually able to participate in the shift may today finally be able to get their wheel in the door.

As the below article states, from the New York Times, by way of the AAPD, Thursday, a landmark case was settled in New York court, allowing the disabled access to the taxi industry. While this may seem like something small, it is an excellent step in disability equality. With access to taxis now, the quiet disabled population will have easier access to a city that the world pays attention to regularly.

 

City Agrees on Access to Taxis for Disabled

By BENJAMIN WEISER and MATT FLEGENHEIMER

        

Ending years of acrimony, New York City has agreed to settle a significant class-action lawsuit and adopt regulations requiring that half of the city’s more than 13,000 yellow cabs be accessible to people with disabilities within six years, a person involved in the negotiations said on Thursday night.

 

The deal calls for half of all new medallion taxis put into service in any given year to be wheelchair accessible until the goal of 50 percent of the city’s fleet is reached, the person said.

The lawsuit filed in 2011 charged that the city, with only a fraction of its medallion taxis accessible to wheelchair users, violated the federal Americans With Disabilities Act.

Documents related to the settlement are expected to be filed on Friday morning in United States District Court in Manhattan. Judge George B. Daniels, who has been overseeing the case, will eventually have to approve any agreement. The deal is expected to be announced formally on Friday morning at a news conference attended by city officials and disability advocates.

Mental Health and Disability

The last blog I wrote was entitled “The Acceptance Problem.” It talked about an issue that is not often discussed within the disabled community, that of disability identity versus complete identity. Now it is only appropriate to talk about another issue that is not talked about which is disability and depression.
       There are a variety of disabilities. There are the obvious types, which can be seen, in physical disabilities. There are also hidden disabilities that impact a person’s learning style such as Asperger’s, Dyslexia or Dysgraphia, just to name a few. However, one type of disability that is not often considered a “disability” is that of mental illness. Whether it is Bipolar Disorder, Schizophrenia, or Depression these can be very debilitating, when one combines these disorders with a physical disability, the discussion virtually stops.       

My battle with depression has led me to come to several conclusions about disability and depression in general, along with the treatment of those who happen to have both. As I have written many times, having a disability comes with many challenges, which include: social, physical, and emotional challenges. The profession of psychiatry and psychology is designed to deal with individuals that have depression, but not often do these practitioners encounter individuals with disabilities. This statement may be incorrect in factual nature but it is not erroneous when it comes to experience. I have battled depression for a long time.

In my late teens, I began to realize that I was different. One may ask, how could you not realize that you were physically different before that? My answer is that for the majority of my life I was treated as if I lived in two worlds. My parents, up to that point, had always treated me as if I wasn’t disabled. I don’t know if there was the intent here or not, but they never let me consider my disability as an obstacle, so I never did. They did their best to allow me to participate in every opportunity that everyone else did. The way they treated me, it never crossed my mind that I was different. However, that all changed in high school.

Adolescence is hard for everyone. Kids in middle school are trying to find out who they are, but they don’t even know that that’s what they’re trying to do. In high school and even at the end of middle school, people are trying to find their niche. I don’t know why, but cliques start to develop. Suddenly, the littlest difference is made obvious, and it is an individual’s goal to hide their difference. However, when one has such physical differences from their peers, it’s kind of hard to hide. I’m not saying that children are malicious on purpose; just that society has taught us to fear difference.

As I began to become aware of my difference for the first time, it was kind of a slap in the face. I took out my anger on my Mom, Dad, and younger sister. The relationship I had with them throughout those years was not the prettiest. And for the constant fights I caused, I apologize. When I first began to deal with depression, I did not handle it properly. I did not seek out professional help. I don’t know whether its because I had been taught by society to fear the stigma that comes with dealing with emotional issues, or what it was, I just know I didn’t handle it properly.

In fact, it was not until an extremely dark incident in my late twenties, that I began to seek help. Many who read this might be uncomfortable with what I’m about to say, but I will honestly say that I had reached the end of my rope. Through a series of incidents, I realized that something needed to be done about the way I approached life and my disability overall. I thought that accepting the problem for what it was and dealing with it would be the biggest hurdle that I had to overcome, but I was wrong.

As I began dealing with the mental health profession, I realized that there was a disconnect between mental health professionals and the disabled community. Most of the mental health professionals that I dealt with seem to think that once I accepted my disability that I would not be depressed anymore. For their part, they were partly right, accepting my disability was part of my problem but not the whole problem.

Acceptance is only the first step. And that is only part of the depression at least for me when it comes to disability. For years I’ve complained that there are two types of disabled people, people that are okay with it and people that are not. However, I’ve recently learned that this is not necessarily the case. There is a third type of disabled person. One who is okay with their disability from a personal standpoint, but who is not okay with society’s treatment of persons with disabilities. Honestly, I can say that I fall into this third category.

It is hard to take the mental health profession and mental health professionals seriously when they do not often believe that there is room for this third type of person with a disability. Luckily, currently, I have the pleasure of working with Dr. Michael Mercatoris who has given me permission to use his name. Mr. Mercatoris is the first one of his kind that I have worked with, who seems to understand that depression and disability is a two-pronged problem.

First an individual, in this case, me, has to accept themselves for who they are and not what society thinks they should be. Secondly, an individual has to realize that there will be societal obstacles associated with their physical disability that may cause depression. The depression will not go away simply because society is not ready for such a radical change and full acceptance of disability as a norm. Rather anyone dealing with depression or a mental illness along with a physical disability must be willing to go against the grain. They must be willing to stand up for who they are and what they are and must be willing to sacrifice in order for society to slowly change, that being said, there are other things that need to happen as well.

If one accepts the premise that depression is going to be associated with disability from day to day, there are certain things that must occur. The mental health community in general needs to be better equipped to deal with i.e. help those with physical disabilities along with their mental health issues. One might ask: how can they do this? I don’t have all the answers but one answer might lie in the way they treat individuals in inpatient and outpatient programs. For example, if one is so desperate that they need to go into an inpatient facility and they have a physical disability, it might be appropriate for all involved with the individual to make sure that that the facility has adequate personal care available while participating in the inpatient the program so that they are not worried about their physical care needs to be met along with their mental health needs. As far as my own personal experience, I can recommend that providers may want to be more open to the idea that individuals with disabilities are intelligent beings and perhaps their pain or emotional issues go deeper than not accepting themselves for who they are, but perhaps they are too reflective for their own good and realize that society is in a sad state of affairs when it comes to disability. Although it is the 21^st century, in some aspects of disability, society is still in the middle ages. This may be a hard pill to swallow for many who are disabled, including myself. However regardless of how hard it is to swallow, the disabled community should have outlets in the mental health community who understand us as people and not just a disorder. Thankfully, I have found two, Dr. Michael Mercatoris and my aunt Eileen. For that I am very thankful.