Setting Boundaries; How Do You Know the Difference Between Someone Being Friendly and Genuine Friendship When You Have a Disability?

It has been a few months since my last blog. However, with it being a new year, what better time than now to hit the ground running with a new sense of purpose and passion? It has always fascinated me how humans can become so disenchanted with life that we reach extremely dark places. To be honest, that’s where I have been the last few months, although it may not seem that way to outsiders. Depression rears its head in the most positive and happy people. You may ask what do I have to be depressed about? To answer without unloading every single problem I face, let’s just say there are quite a few things about my life that would depress most people. How you overcome the difficult times you face defines you as a person. We often require the help and advice of our friends, colleagues, and family to reach the other side of that “dark place.” Lucky for me, I have an amazing group of people that make up the support team that helps me navigate through my “dark place.”

Recently, I was having a conversation with one of those people when she brought up a topic that I believe does not get discussed the way it should be in the disability community. Although oftentimes, we have to remind others disabled people are just like everyone else. For the purpose of this article/blog, I am not referring to the differences our disabilities present physically or, in some cases cognitively, rather I am simply referring to the idea that, like the rest of humanity, disabled people want and deserve to experience the joy and happiness that come with genuine friendship. Bearing this in mind, I will use the rest of this piece to rather provocatively argue that although disabled people may not mean to, sometimes, in our pursuit of genuine friendship, we shoot ourselves in the proverbial foot. Don’t agree? You have the right to feel that way, but if you indulge me, here are a few examples to support my assertion.

I use personal care services to perform my everyday ADLs. This means I am with a caregiver in a one-on-one situation most of the time. The caregivers do mostly everything for me. They help me in the restroom, and until recently, they help me eat all the time. (I now occasionally, depending on what I am eating, will use adaptive utensils,) as well as many other activities throughout the day. Naturally, when people spend so much time together, they will become close on some level. What I believe happens to people with disabilities is that they believe that every caregiver they have will be a friend for life. Now I am not saying that caregivers don’t fall into that category by any means. I myself have a handful of caregivers that either work for me now or have worked for me in the past that I consider “genuine friends.” I am simply arguing that because our desire to make friends is so strong that sometimes we mistake someone’s being friendly forNeeds when you read it again, some time will friendship. Sometimes we’ll forget that boundaries must be established between us and our PCA. You must remember that it is incredibly rare in life to have true friends, either in a professional setting or otherwise. The few true friendships we are lucky enough to develop throughout life must be cherished and treated as special. Regarding people with disabilities, we must set boundaries with our PCAS and realize that most of them will not become lifelong friends.

There is yet another area where people with disabilities sometimes forget about the rarity of true friendship. I believe because a large portion of people with disabilities did not grow up with the same social opportunities as our able-bodied counterparts, it is hard for us to navigate the social structure of society. We often get so attached to people that we do not realize it is natural for people to come in and out of our life. That being said, it is unfair for us as people with disabilities to expect every friend we make to talk to us regularly. I have had to learn this the hard way. I now understand that life happens. Just because you don’t talk to someone regularly does not mean they don’t care for you.

In closing, I would like to say that the views expressed in this blog are my own. They may or may not reflect the views of other individuals with disabilities. As a final thought, I know that I have grown a lot, but I also know that to fully grow as a person, my journey will never stop.

Until next time…

Jason

Definition of Terms

1. ADLs-Activities of Daily living

2. PCA (Personal Care Assistant)

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.