One Self-Advocate’s Journey To Redefine the Shoe Industry for People With Disabilities Reinforces a Point That My Dad Has Been Preaching for Years

In Tuesday’s blog post, I talked about a speech I heard this past weekend from a young man by the name of Matthew Walzer. His speech came at a perfect time in my life. As I said in the blog Tuesday, until this past weekend I had been lost and in a sort of never-ending fog. Since Matthew’s story impacted me so much, I thought I would share it and its similarity to a point my dad has been trying to get both me and my sister to appreciate for years. By the end of this piece, you will not only understand the great wisdom of my dad but also you will hopefully appreciate the tenacity Matthew showed in his effort to redefine sneakers for people with disabilities. In short, by the end of this piece, you will understand why I believe in the saying, “Attitude is altitude”. 

Every good story must start with a problem that the protagonist must face. Only this time, Matthew Walzer wasn’t writing fiction. Matthew was born with Cerebral Palsy. While some with Cerebral Palsy are wheelchair bound like myself, Matthew can mostly dress himself. The only problem is up until he decided to change it at the age of 16, he had a problem tying his shoes. Matthew would have to ask his parents to help finish dressing him. Matthew was not satisfied with this. He had dreams of going to college but was worried about being embarrassed, and who wouldn’t be embarrassed, by having their parents tie their shoes in college. What was Matthew to do? 

Being proactive and a forward-thinking individual, Matthew wrote a letter to one of the largest shoemakers in the world. He wrote to Nike explaining his dilemma and after years of development, Nike would come out with a slip-on sneaker which they called FlyEase. Matthew may not have been aware of how his letter would change not only his life but the disability community as a whole, however, his impact is much more than just a shoe. Matthew displays a drive and tenacity that most people wish they had. 

When I heard Matthew tell his story this past weekend at the Florida SAND conference, I was immediately struck by two things. The first thought was holy shit this kid has balls. The second thought was I used to be like that. What the hell happened to that Jason? I used to live by the saying “Fear nothing, Regret less” but compared to Matthew I was falling short. As I said in Tuesday’s blog, Matthew has inspired me to change that, but he has also done what my dad has tried to do for what seems like a lifetime. 

Many years ago my dad told me to not let my disability hold me back from doing anything. At the time, he did not use the phrase attitude is altitude but clearly, that is what he meant. Matthew and my dad are both wise beyond their years. They both understand that our lives are ours to live. They only will be as good or as bad as we let them be. I know I am posting this on a blog related to disability, but Matthew’s point goes far beyond having a disability. Yes, he was born with a disability but besides the fact that he uses crutches to get around you wouldn’t know it. 

The attitude that Matthew and my dad and for the most part, I have, is not very common anymore. But given the state of the world in some people’s opinion, that might make sense. I argue that the negativity and pessimism that we see in a large part of society today regardless of disability, race, gender, or economic status, only produces negative outcomes. If we as a society think negatively, we will not be satisfied with how things turn out. 

In closing, perhaps the epidemic of depression and suicide as well as a feeling of not having a social identity can be simply attributed to the way one looks at life. But I could be wrong. After all, I’m just a 37-year-old Quad who has Cerebral Palsy. However, I believe that what I lack in the physical department, I make up for in common sense. Anyway, just food for thought.

Jay

Goodbye to the Funny Man

 I suffer many trials and tribulations like everyone else. My physical disability is an apparent battle that I struggle with. However, other battles aren't quite as obvious. Recently, the well-known actor Robin Williams took his own life because he battled depression. This is a disease, which I battle as well. The stigma of depression is overwhelming sometimes. If one finds out you suffer from depression, they look at you negatively. There are more negative consequences of depression in my estimation than with being obese or having afflictions.

            With Robin Williams's death, I was set back. It shocked me that someone with such a promise and an appreciation for humor like myself, could not fight his demons anymore. It got me thinking, and to be honest, it got me questioning myself. I often wonder if I am strong enough to battle this internal struggle that I deal with every day. Hopefully, with Mr. Williams's death, people begin to realize that depression isn't something we can take lightly anymore. Mental health, in general, in this country, is not given the attention it deserves. Hopefully, with this tragedy, more attention will be paid to depression, immensely, and mental health in general.   If something does not change soon with the way society views mental health, tragedy will continue to occur.

            Those close to me know that I suffer from depression, but only those who also suffer from depression can understand what it is like every day. Some days, the pain is so great it is like nothing you have ever felt before. There are other days that you are happier than you have ever been to. It is a delicate balance between the two; what works for me does not necessarily for everyone. The tricky part of depression is that it is unique to every individual. Its cure is not found in a medical book. Its symptoms are not obvious, and it is not often talked about. Some of you who read this may wonder why I am disclosing that I suffer from this disease. The answer is quite simple. The stigma of depression needs to be broken. More people need to talk about what is going on inside their heads rather than just pretending like it's not there. If we do not change our view of depression, what happened to Mr. Williams will happen again. Mr. Robin Williams, you will forever be missed, and you were one of my favorite people.

 

Mental Health and Disability Part Two: Where Society Needs to Catch Up

Late last year, I brought up an issue that was not discussed very much in the disability community, disability and mental health. As I thought about this blog, I remembered a recent email that I got, and it inspired me to revisit the issue. In the email was a story about how colleges are flunking mental health treatment.

            The article described a young boy, Dan, who had mental health issues and made a wrong choice one night in an attempt to overdose. To summarize, he did not overdose. He was having trouble dealing with a new medication, and once his medicine was adjusted, he was fine. However, his college did not treat him appropriately.

            His health center referred him to a hospital, which they should have done, but the administration's actions were incorrect.  Instead of recognizing a student in trouble, they treated Dan as if he was a criminal.

            My previous blog on mental health dealt with how society doesn't view depression correctly. This latest article in News Week confirms what I had written. Depression is still such a stigma that it is almost a dirty word even in higher education. What does this have to do with disability? It has everything to do with it. Depression and disability in general in our society is seen as something dirty. When it is said that someone is depressed or disabled, they are seen as unclean or unworthy. It is a shame that places of higher education are perpetuating this stereotype. I can speak from personal experience when I say that even higher education places view depression as a dirty word. Not only did they kick Dan out of his school involuntarily, but also they did a similar thing to me.

            It is said that the American land of immigrants is so afraid of difference. We will not be able to progress as a society if we do not understand that differences are fundamental to the growth, and not everyone is given the same skillset. Some of us must deal with obstacles that sometimes overwhelm us. We should not criminalize those who have depression or other mental health afflictions; instead, we should strive to ease their pain.

This will not happen if we do not admit that depression is not necessarily a bad thing. Depression, instead in most cases, is our body's' way of telling us to reexamine what is going on around us. I know most of society doesn't view depression the way I do, but regardless of whether you agree with me or not, you have to agree that society needs to be more accepting of mental health issues. If places of higher education are so educated, why can't they lead mental illness acceptance? The answer is simple.

Places of higher education are scared of mental illness for the same reason society is scared of mental illness. They are afraid that if we embrace mental illness for what it is, it is an admission that the human consciousness is not as self-reliant as society thinks it is. We need to accept that it is a part of the human condition to ask for help. It is a part of our condition to be reliant on others. Keeping up with the Jones's individualist type mentality that we currently live in, it is taboo to admit that you go against the grain and do not subscribe to the emotionalist culture we live in.

Colleges could be on the front lines of helping those who are depressed, but instead, they sit at the back of the class. It is time for a societal-wide change in disability and depression, and change can happen if it starts now. 

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.