When You Have a Disability, Is There Such a Thing As Privacy?

As humans, we crave interaction with others. Indeed. when we don’t have social interaction with other people, feelings of despair and loneliness can overwhelm us. However, in the age of social media have we gone too far? Every aspect of most people’s lives is available for consumption by others now. This may be a new concept to the majority of the world but for one segment of the population, I argue that a lack of privacy is not a new concept. Indeed, it may even be a bigger problem for people with disabilities than their able-bodied counterparts. 

Frequent readers of this blog know that I have a disability known as Cerebral Palsy. Cerebral Palsy, for my new readers, is a congenital disability that occurs at birth. It usually occurs during the delivery process; it is not genetic or at least there is no evidence that it is as of yet. There are many forms of Cerebral Palsy and it can affect people in a variety of ways. Some people with Cerebral Palsy have a slight limp when walking, others use a wheelchair for some things but are semi-self-sufficient. Finally, there are severe cases like mine, where the individual is confined to a wheelchair and requires physical assistance for most activities of daily living (ADLs). Cerebral Palsy does not only affect people physically. Indeed some, unlike myself are intellectually impaired. This is not to say those who are intellectually impaired live less of a life, I’m just recognizing the fact that I am not.

 I am aware of how involved other people are in my life, to put it bluntly: I can’t eat, drink, shower, or even use the toilet without the assistance of someone else. Hence the question in the title of this blog. Is there such a thing as privacy when you have a disability? I argue that when you have a disability it is up to you to demand privacy whenever possible. The rest of this post will hopefully provide you the reader, with a new understanding and perspective as to why I feel the way I do.

Before I go much further, let me address the elephant in the room that I know some of you are thinking about. When you first glanced at the title of the post you probably thought it was going to be primarily about sex and intimacy. Yes, that is part of it, but not all of it. I am blessed enough to have, if I may be so bold as to embarrass her for a second, an extremely gorgeous and sexy little alien girlfriend. I count my blessings every day. I consider it a blessing that she not only puts up with my sarcasm and snarkiness but also my complete nerdiness as well as my overly emotional girly side at times. However, this is not the only way in which I am blessed; I also consider it a blessing that I even have a girlfriend. I am aware that most people with disabilities (I know I’m making a sweeping generalization) are single for one reason or another. Some of it is by choice but I believe, and now here comes the annoying opinion again, that most people with disabilities are single because most of the world sees people with disabilities as undatable. This is coming from experience. Yes, even someone with a disability like mine can be guilty of this type of thinking.

Now that I am done doting on and embarrassing my girlfriend, let me get back to my main point about intimacy, sex, and privacy. Some parents who read this next part may not agree with it because they may have a different view on physical intimacy than I do. You have that right and if you choose to, please skip over this part of the post and move on to the non-intimacy section of the article. I believe in every relationship whether it is one that is just beginning or one that spans multiple decades, there is a need and desire for intimacy both emotional, spiritual, and physical. When you have a disability, however, that may look different than the “norm”.  When you have people all around you 24/7 or close to it, it is nearly impossible to have a “private” conversation even if you put in headphones and talk on the phone or video chat while you are apart, or when you are together shutting the door, problems still arise. 

Caregivers or support personnel or whatever you choose to call them are always around and walls are only so thin. Whether you are having a normal conversation or a more risqué one, unfortunately, whether they intend to or not, other people will overhear your conversation. That being said, it is common for all of us disabled or otherwise, whether we comment or not, to form judgments about what we hear and fill in the missing pieces. 

If that wasn’t bad enough, say a couple reaches that stage where they are ready for physical intimacy and they require caregivers, another question arises. How to involve or not involve help? Everyone deserves physical intimacy at some point in their lives, the question is what do you do when you can’t do certain things on your own? Do you not do them?  It is a sticky question that I don’t think many people are asking. “That dreaded opinion again”. Perhaps the reason they don’t ask such questions is because they don’t see disabled individuals as “capable” of being physically intimate. 

Anyway, moving on from the uncomfortable section of this post. As I said earlier, privacy is much more involved than just privacy in a relationship. How does one maintain their dignity if they are “exposing themselves” and every detail of their lives to caregivers or family members? There are some in my life who have recently said to me that there is no such thing as privacy when you have a disability. It took me a while, but I have come to partially agree with them. I argue that even though one may have family or caregivers extremely involved in their lives, it falls on the person with the disability to create boundaries. This could be something as simple as asking the people in your life to announce their presence in some way; knock on the door before they enter the room or give a verbal signal. Finally, another example of a boundary could be not having people speak for you when you have a disability as they often do (these are only two examples of many).

In conclusion, I believe that privacy is relative when you have a disability. Some aspects of your physical care cannot possibly remain private, but there are aspects of your life whereby taking the proper initiative the person with the disability can maintain or restore some of their privacy. 

Anyway, this has been a long blog and before I overdo it and lose the impact of what you have read, I will say good day. I hope you have enjoyed not only this blog but the other blogs you have read this week. More to come on Monday.

The Power of Disability Advocacy: Making a Difference and Driving Change

I know I have written a lot about disability advocacy I felt it was time for a refresher/ beginner's guide for those who are reading this blog for the first time and do not know much about disability advocacy. I recommend you read this blog first and then sample my other pieces. 

Disability advocacy is a formidable force that has the power to break down barriers, challenge stereotypes, and drive meaningful change in society. It serves as a catalyst for transforming attitudes, policies, and systems, ultimately creating a more inclusive and equitable world. In this blog post, we will explore the remarkable power of disability advocacy, highlighting how it makes a difference and drives change at individual, societal, and systemic levels.

Empowering Individuals and Amplifying Voices:

Disability advocacy provides individuals with disabilities a platform to be heard, acknowledged, and valued. It empowers them to advocate for their rights, express their needs and aspirations, and participate fully in society. By amplifying their voices, disability advocacy helps individuals gain confidence, build self-advocacy skills, and assert their rightful place in all aspects of life.

Shattering Stereotypes and Promoting Inclusion:

One of the key roles of disability advocacy is challenging misconceptions and stereotypes surrounding disabilities. Through awareness campaigns, education, and personal stories, disability advocates work tirelessly to dismantle biases, promoting a more accurate and inclusive understanding of disability. By highlighting the diverse abilities and talents of individuals with disabilities, advocacy efforts foster a culture of acceptance, respect, and celebration of differences.

Influencing Policy and Legislation:

Disability advocacy plays a pivotal role in shaping policies and legislation that protect the rights and improve the lives of people with disabilities. Advocates work closely with lawmakers, government bodies, and organizations to advocate for the removal of discriminatory practices, the implementation of accessibility standards, and the provision of necessary support services. By driving legislative change, disability advocacy ensures equal opportunities, access to healthcare, education, employment, and independent living for all individuals with disabilities.

Fostering Accessibility and Universal Design:

Accessibility is a fundamental aspect of disability advocacy. Advocates work towards creating an inclusive environment where people with disabilities can fully participate. This involves advocating for accessible infrastructure, public spaces, transportation, information and communication technologies, and digital platforms. By promoting universal design principles, disability advocacy not only benefits individuals with disabilities but also creates a more inclusive society that benefits everyone.

Promoting Employment and Economic Independence:

Disability advocates strive to break down employment barriers and promote economic independence for individuals with disabilities. They work with employers to raise awareness about the value of inclusive hiring practices and the benefits of a diverse workforce. Through advocacy efforts, job opportunities are created, workplace accommodations are implemented, and discriminatory practices are challenged, fostering an environment of equal employment opportunities and economic empowerment.

The power of disability advocacy cannot be understated. It has the potential to transform lives, challenge societal norms, and drive change at all levels. By empowering individuals, shattering stereotypes, influencing policy, fostering accessibility, and promoting economic independence, disability advocacy paves the way for a more inclusive and equitable society. It is through collective efforts and the unwavering determination of disability advocates that we can build a world where every person, regardless of ability, is embraced, valued, and given equal opportunities to thrive. Let us stand together and continue to harness the power of disability advocacy to make a difference and drive lasting change.

Till next time, Jay. 

The Personal Care Crisis Continues: How a Lack of Funding for Home and Community Services Reinforces Larger Problem Within The Disability Community

To all my regular readers I want to say welcome back and thank you for your continued support. To anyone reading this blog for the first time welcome, please make yourself comfortable and grab a seat or a parking space for your wheelchair and a beverage and enjoy what is to come.

In January 2014 I wrote a blog entitled “Aide Care System; The Hurtful Loop Holes” I have included the link to this blog at the bottom of this piece. That piece discussed a crucial problem when it comes to aide care that people with disabilities still face in 2023, however one area it did not cover in great detail was the lack of funding for aide care waivers. The waiver goes by different names depending on the state you live in. I currently live in Florida. Here the waiver is known as the Home and Community-Based Services Waiver. The waiver in theory like all the other waivers started out with good intentions but to be quite honest good intentions don’t pay the bills. In my previous blog on the subject, I talked about federalizing the home healthcare system, however, even if that were to happen there would still be a funding issue. Don’t believe me? Let me explain. 

Right now, I am honored to be a first/second-year fellow with FL-SAND (Florida Self-Advocates Network’D). Thanks to my involvement with the fellowship I have the opportunity to go to Tallahassee on March 13th and 14th for what is known as Developmental Disabilities Awareness Day. This annual event allows those with disabilities to meet with elected officials at the capitol and discuss crucial issues that impact people with disabilities in Florida. FL-SAND and its primary supporter the Florida Developmental Disabilities Council (FDDC) are once again encouraging legislators to put more funding into the Home and Community-Based Services (HCBS) waiver or as it’s known in the disability community the iBudget waiver. The need for the waiver to be funded is not a new concept nor is it exclusive to Florida. There are two questions some of you may be asking: where is the money going to come from? However, perhaps the more eye-opening question/comment I have honestly heard from people is, “Shouldn’t people with disabilities be happy that they are alive or slowly improving like they are, I mean they have the ADA or the Americans with Disabilities Act?” 

The above comment which was actually made to me several weeks ago shows that there is still a fundamental problem that needs to be addressed. It is my opinion that programs such as the iBudget Waiver receive such little funding and attention not only because we are several trillion dollars in debt but perhaps more importantly because of the way society, for the most part anyway, still has a 19th-century view of disability. That being said the only way we are going to increase funding for such vital programs is to continue to work to give people with disabilities a proper seat at society’s table. Yes, we have such documents as the ADA, but I argue that a piece of paper or law is not enough, however, let me give you one other piece of evidence that reinforces the argument above. 

In order to further prove that people with disabilities still occupy a literal seat at the back of society’s bus, one only has to look at the amount that personal care workers are paid. The pay does not equal the work required and it shows that the disability community is being marginalized to make a profit. My night aide during the week only gets paid $14 an hour. Last time I checked the minimum wage for personal care workers was supposed to be $15 an hour. I am curious to know what the agency charges. It would be safe to assume that they charge a whole lot more than $14 an hour. If I was guessing I would put the figure in the high 30s. I plan on investigating the issue further, and thanks to my fellowship I know the perfect place to start my investigation. I plan on contacting the Agency for Persons with Disabilities (APD) in Florida to see why the state mandate that was passed on July 1st of last year mandating a minimum wage of $15 an hour for all Direct Service Providers (DSPs). The first question I will ask is, “is there a reason agencies aren’t being forced to comply with the mandate?” Depending on the answer I receive I will follow up by asking them “if agencies have not complied are they given a grace period in order to comply? If so what happens if they do not comply by the end of said grace period?”

In closing, I know this is one of my longer posts, however, I feel the issue still needs a great deal of attention. While I agree with my fellow self-advocates that change is necessary, as I have argued throughout this piece the funding crisis highlights a less talked about issue. Whichever side of the debate you fall on there is no argument that this cannot be solved overnight. It will take the voices of the voiceless continuing to fight, in order to make the greatest change. 

Till next time, your friendly neighborhood super advocate has these final words, “no one will change your life but you, continue fighting fellow advocates and allies!” 

Teachable Moments, We can be Teachers Too

What does it mean to teach? In simple basic terms, according to the dictionary, it is a verb. It means to impart knowledge of or skill in; give instruction in, and impart knowledge or skill to; instruct to. We all understand the basic definition of teaching. The question is, how do we define teachable moments or teachers themselves?

I recently graduated with a Master's in education. Still, my institution told me that I could not get a teacher's certification, according to Pennsylvania, because I was too disabled to teach. At first, this statement, to put it nicely, perplexed me. What did it mean I was also disabled to teach? How could they judge me without allowing me to try? As time has gone by, I have begun to understand their position. I disagree with it, but I understand it now.

They look at disabled people in a traditional box. Due to my physical limitations, they could not look past my lack of physical capability and see the great deal of knowledge that I can pass on to others. They were afraid to go to bat for someone so different, even if they had great knowledge to pass on. I've also changed my perception of what a teacher is in general. Yes, a great deal of teaching occurs in the classroom, and eventually, that is something I want to do. However, I have learned that disabled teachers can exist, and often they have greater mobility than traditional teachers.

Until society and those in higher education stop putting disabled people in a box, we need to take ourselves out of that box. For the time being, we might not b able to be traditional classroom teachers, but every disabled person has a story to tell and lessons they can teach those around them. Often the most powerful learning occurs outside the classroom, not in it.  Disabled people in general and society need to expand their definitions of a classroom and realize that there are teachable moments every day in the life. You can teach your aides, and they can teach you. You can lead a stranger on the street and change their life forever. To do so, there are a few necessary components, none of which involve the traditional four walls of a schoolhouse.

To be an effective teacher with a disability, one needs first to understand themselves and their limitations. Second, they need to view events in their lives as having a purpose, even the small and bad ones. Third, they need to find their outlet. Mine happens to be writing at this point; others might find their outlet in other ways. However, one finds their outlet; it is essential to develop it. Finally, for disabled people to be effective teachers, we need to not give in to what society says it has mandated for us. If we develop our voice and tell our story and it touches one person, we have been influential teachers.

Traditional classroom teachers and teachers who teach online are often knowledgeable about content. With the way teaching is now, they have minimal opportunity to bring their experience into the classroom. It is those teachers that do so that turn into great teaches. Disabled people have a leg up on the second crucial teaching element that great classroom teachers excel at. While some of us, hopefully, myself included, will eventually be a classroom teacher, disabled people must look for unique teaching opportunities until society realizes that we can be teachers in the traditional sense just like everyone else. These traditional opportunities may include writing a blog like this one, teaching a class online, or just having a conversation with someone who asks a question about disability. Whichever way you choose to be a teacher, it is clear that we need more disabled teachers in this world because there is so much we learn daily from one another. Why not be a part of that conversation if you have a disability?

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. 

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. 

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. 

The Acceptance Problem: It’s Yours, Not Mine

Okay, so usually I don’t write two in a day, but something has been on my mind lately, and the blog I posted earlier wasn’t an original piece of writing. Instead, it was forwarding an inspirational story. So here’s my daily food for thought.
       I warn you that this blog may unsettle some, and it may make you uncomfortable. The un-comfortableness will come from the overuse of swear words or a sexual conversation. It might come from looking at “ourselves” (society in general) in the near. Some of you may not like what you see if you are honest with yourself. 
       I am two and a half weeks away from finishing my Master’s Degree at my school in  Northwestern, Pennsylvania. As I complete this round of my academic work, I am forced to reflect. For the last nineteen years of my life, give or take a semester or two, I have been on the “right path.” We all are required in the end states to enroll in 12 years of compulsory education. After that, different paths can emerge depending on the individual. My approach has been full of curves and wrong turns and such.
       Now some of you may say, “But you’ve told us before you have two Bachelor’s degrees and just said you’re getting your Master’s Degree! What more could you want?” And to be honest, I reflected on this question for several weeks now. I even talked to varying sources, and many of them have told me this, “You are at crisscross roads in your life because you didn’t accept your disability sooner and set your expectations reasonably.” To them, I say it is not that I have the acceptance problem. It is you. “You,” in this case, being social. Even my parents and my shrink (who I occasionally go to) maintain my sanity have remarked that perhaps a little bit of my problem is accepting my disability. 
       Is my problem accepting my disability, or instead is it accepting what society thinks I should be? Limited to or capable of because of my disability. I believe it is the latter, and I will say this straight out. You’re damn, right! I don’t accept limitations put on me by anyone except myself. If that means I have an acceptance problem, then I guess I do. 
       Last Christmas, I asked for a book on the history of the disability rights movement entitled “What We Have Done: An Oral History of the Disability Rights Movement.” I have not been able to steadily read that book due to my Master’s Program requirements, but tonight when I read Chapter 3: Discrimination, I realized not much has changed from the ’50s to today. Some of you may say, but we have the ADA! Society is much more accepting of disability! To that, I must sarcastically laugh. Yes, the ADA has removed the barriers physically to many of the obstacles that face the disabled community. What it has not done is to remove the societal stigmas that come with disability. For example, there was a story in the third chapter of the book about Johnnie Lacy, a disabled individual who wanted to be a teacher, very much like myself. Lacy was systemically persuaded not to be by the same institution, allowing her to take special education classes. When I read this story, I couldn’t help by seeing myself.         
       Yes, I will have three degrees in about two-and-a-half weeks. Still, the route a lot of my college education (especially recently), I have been persuaded or “recommended” not to pursue the paths I follow. The problem is that we fight, and we fight for so long because we know we’re capable of doing whatever we put our minds to. Still, eventually, it’s not necessarily that we give up, but we come to a realization when the whole institutional system is against you. And you have no allies except the people that know you personally; there’s not much you can do. Even though my parents and counselors (and even friends) believe that I am perfectly capable of teaching, they do not have any power when it comes to educational institutions.
       Eventually, I just gave in, so I will walk away with a degree that I will not be able to use. Because yet again, this happened. When I expressed this sediment to this and others around me, they remarked that I haven’t accepted my disability and need to be more realistic about my expectations. To them—in this format, I say you might be wrong. Screw that. I am not bitter and am perfectly aware of my limitations. What I do not accept is the lack of opportunity in the greatest country in the world. We have the Americans with Disabilities Act, that “gold standard of disability law,” but it hasn’t done jack shit when it comes to disability and equality. Just because we can get into a building doesn’t mean society wants us there, and that is the next struggle that the disability rights movement will have to undertake. 
       Finally, someone liked the comparison, but as I dive deeper into the disability rights movement and find my voice, I can’t help but compare our struggles to African Americans in the ’60s. They were discriminated against because of some God-given skin pigment, and people like me, whether wheelchair-bound or disabled in some other way. I am discriminated against because society has such a screwed up perception. Not because we are flawed but because the company itself is flawed. It may take to the end of my life and beyond to fix that problem. Right here and now, I dedicate myself to making life better for further generations of disabled Americans and disabled individuals around the world.