Lego Strives To Make Play Accessible for All: Braille Legos Soon To Be Available In The U.S

Mostly everyone, regardless of their age, is familiar with Legos. Some were obsessed with them as a child, owning every kit and every expansion set; however, some may be unfamiliar with what exactly a Lego is. According to their website, Legos are a series of interlocking plastic blocks that can be assembled to form buildings, characters, vehicles, and other objects.

 

The Lego company was founded by Ole Kirk Christiansen in 1949. Since Lego’s founding, the company has always been at the forefront of the latest trends, whether it’s a hit movie, TV show, or, more recently, the concept of inclusion and universal design.

 Words

You may ask, what is universal design? According to the University of Washington, universal design is the process of creating products accessible to people with a wide range of abilities, disabilities, and other characteristics. Now that we understand the universal design (UD) concept, we can apply it to a new product that the Lego company unveiled in the U.S. on September 1^st of this year. The new innovative product is a Braille Lego Kit. Once it hits the market this Friday, it will bring the world of Legos and basic education to children with visual impairments.

 

The Braille Legos are not a new concept. They are just new to the U.S. market. The idea was first introduced in the U.K. in 2020. The idea behind the UK products was to make them available in educational settings only. The original kits came with 300 pieces with markings corresponding to each Braille alphabet letter. These blocks were originally designed for children between the ages of one and four. However, the researchers quickly saw the product's potential with other groups.

 

After three years of perfecting the product, the Lego Braille blocks will officially go on sale in the US tomorrow. They will retail for approximately $89. This time, the kits will include 226 pieces with the Braille markings on one side and the English equivalent of either a letter or number on the other side so that those who are assisting can easily use the product.

 

In closing, there is no doubt that the steps the Lego company has taken to include a segment of the disability community should be commended. However, although this blog focused on individuals who either have low vision or are blind, I make it my mission to research whether there are other adaptive toys for other segments of the disability community. If anyone reading this can point me in the right direction, I ask that you either leave a comment on this blog with your contact information or email me at jasonhahr@gmail.com. Let’s all use the fourth principle of self-determination, which is responsibility, and remember that we all should give back whenever we can.

 

Thank you for reading this post. I hope you enjoyed it, along with the other recent posts on this blog. Don’t forget to come back tomorrow for a more comprehensive explanation of self-determination.

 

Your friendly neighborhood super advocate

 

Jay

How To Have a Healthy and Long Lasting Relationship With Your Significant Other

Hello again, I hope that everyone who is reading this had a great weekend and enjoyed the posts from last week. 

On Friday, I wrote about privacy and setting boundaries when you have a disability. This post will examine boundaries also but this time from a different angle. In this piece, we will look at the idea that some people with disabilities tend to rarely find themselves in long-term relationships, because of their inexperience with romantic relationships sometimes they end up unknowingly losing themselves in the relationship and neglecting other parts of their life.  This piece will provide some helpful tips to ensure that any romantic relationship you have as well as the other relationships in your life are balanced.  

Anyone who either knows me or reads this blog regularly will be aware of the fact that I am now in a relationship with a little alien by the name of Samantha. What you may not know is Samantha is the first disabled person I have dated and my first long-term relationship since I was 18. My previous relationship lasted a few months so some might not even call it a long-term relationship. Either way, my relationship with Sam is the longest relationship I have had.  We have only been dating for a little over a year but it has been a wild ride in a very good way. I believe until recently we were still in the honeymoon phase, or at least I was.  This is not to say that we are still not learning about each other and growing together as a couple. 

For the first 13 months or so of our relationship, we would call each other every time we got a break in our day, and this was immensely enjoyable but for my part, it eventually turned into a routine rather than a vibrant conversation with someone I love where we had things to share with each other. That all changed after a conversation a couple months ago. 

One night instead of being nerds and reading the fourth Harry Potter which we have been doing for months…will we ever finish it? I’m hoping so but I will let you know when we do. Anyway, back to my point. One night the topic of our relationship came up. As I said on Friday, when you have people constantly around you, they observe certain things even if you do not know it or want them to. In our conversation, it came out that people in our lives were making comments about our relationship, and at the time I thought they were unfounded. However, looking back, maybe these comments were wiser than I realized. To summarize, many people said we both, but for the most part, I had changed. Upon hearing these comments, I immediately jumped the gun and reacted negatively. 

According to some, they felt that I was consumed with Sam. After taking a breath, Sam calmed me down. She made me realize that perhaps because I have not been in a long-term relationship I was going in full throttle, perhaps even a little too much. It’s funny how people closest to you give the best advice but they are the last ones we listen to. Anyway, as a result of that conversation Sam and I now talk once or twice a day so that we have something to talk about at the end of the day.

I found that our conversations were richer and not as forced as they were when we talked constantly. I am thankful for that. An added benefit of the change in communication style between the two of us is my personal growth. 

I am now developing better relationships with close friends, taking time for family and caregivers, and even getting back in touch with my spiritual side. I was raised Catholic but have drifted away from the Christian church, or for that matter, religion in general. Since I have been in a relationship with my alien, my faith has been reawakened, and I am slowly building upon it. For that, I must thank Sam. Even though I have been surrounded by religion my entire life, when you are forced or constantly reminded to find faith you quit looking for it but when faith finds you this is truly the way a relationship with God is supposed to develop. 

Along with my faith journey, since I have changed the communication style in my relationship, I have paid more attention to the opportunities life is providing me. Recently I have found a new passion for self-advocacy and as I mentioned last week, I have found my true purpose in life. On that topic, my sister pointed out to me that something I said in my blog post last Tuesday might have been misunderstood. 

In the blog, I wrote last Tuesday I mentioned it is my new passion to obtain a law degree in public policy and become a civil rights/public policy attorney. After talking to my sister, I realized that it may have sounded as if I was going to immediately pursue that goal and forget about everything else. The opposite is true. That is my end goal. For those who are curious to know I have a plan of action to get me to that eventual goal. In short, next March I intend to apply for a six-month program in which I will learn how to advocate for different legislative policies that affect people with disabilities in depth. Hopefully, this program will provide me with a foundation for my future goals.

In conclusion, in order to have a healthy fruitful, and most of all lasting relationship with a significant other I have learned that there is one key factor. This simply comes down to personal growth i.e.: having a life apart from your partner so that you can come together as a couple and enrich each other’s lives and grow together. 

I hope you have enjoyed this little bit of relationship advice from someone who is still learning. Having said that, please note the above blog and the advice given in it is just that. You don’t have to agree with what I said at all; if you do that’s great, if you don’t I respect that as well. Anyway, until tomorrow, I hope you have a good rest of the rest of your day.

Jay

Sad Times At KFC

            What a disgrace! These are the first three words that came to mind when I read an article on the social media giant known as Facebook recently. The report detailed how KFC, a chicken place famous in the U.S. A turned a little girl away because Pit bulls had recently mauled her. According to the article, "She has turned out because other patrons may be scared by her face and injuries. The link to the full report can be found at the end of this post.

            When I first read this, I couldn't believe that it could be true. However, since I read the article in the day and a half, I have read other people's posts about the incident, which leaves me to believe that it is true. Not only do I feel bad for the little girl who is most likely going to have psychological damage for a long time, but I feel bad for society.

            It is 2014, and we still have people who hold archaic views on the difference. I get that KFC cannot control their employees' attitudes, but I sincerely hope that the employee who said this was fired. Since then, KFC has offered to pay 30,000 dollars towards the girl's medical bills. It's sad to think that this is just a PR move, but that is honestly what I believe. In my opinion, KFC is not doing because it is the right thing to do to fix the injustice done, but they are doing it save face.

            What kind of country have we become that in 2014, the difference is still looked upon individually so negatively. No, the girl did not have a permanent disability, but she does have a temporary one. This is why I write about the article here. The KFC incident reinforces my idea that disability is not physical and mental, but social. Let me explain.

When someone is classified with a physical disability, in society, that is, it means they are a lower class of citizen. What it means, though, is that they do things a little differently. Their physical differences do not limit them except in very few tasks. What limits them the most is society's perception of what they should be able to do. The KFC individual has such an archaic view of disability that he could not even think before imposing social restrictions and barriers on the little girl. However, an incident like this is not isolated. It reminds me of an experience in a movie called The Music Within. The film is about the development of the Americans with Disabilities Act. In the film, the lead character, a disabled man, is turned away from a North West restaurant because of how he eats pancakes. In that movie, the incident occurred before the Americans with Disabilities Act was made into law, and it showed that people in that era were not accepting of difference. My question is: how long before that era is over?

 

http://www.people.com/article/kfc-pays-medical-bills-girl-pitbull-att

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?

Lets Get Intimate

CONTENT WARNING! READER DISCRETION STRONGLY ADVISED.

So something is bugging me. I’ve been watching a lot of political television lately, and a lot of the conversation has been about how my generation does not know how to communicate because of their reliance on technology. This is an interesting topic, but it also got me thinking about other issues and the way my generation views them.

As someone in his late twenties, I find myself every once in awhile craving stability and a family. I feel this is a natural thought process for anybody who is on the other side of 25. The only difference with me is that I am disabled. Disability and intimacy don’t usually go together. Perhaps that is why I feel the need to write this blog.

I’ve written a lot about funny stuff, serious stuff, but never an issue that affects me so deeply. What I am about to say may come off as controversial or different, so if you choose not to read further I understand. Understand however that if you do read further, you are going to hear some things you are not used to.

In other blogs, I have written that disability is seen as strange because it is different. The relationship arena and specifically the sexual arena are no different for people with disabilities. Most people have a preconceived notion of what beauty is. Most often it is someone skinny, fit, athletic, very rarely do people with disabilities come into the attractive conversation. When people with disabilities present themselves as dressed to the nines, people don’t take it, as they should. They are taken aback that “these people” even care about their appearance. However physical appearance is not the only problem that disabled people face in the relationship and sexual arena. Some disabled people yes indeed cannot help their appearance because of certain deformities, so they are already at a disadvantage. These deformities aside, there are much more fundamental barriers that disabled people face in these two areas. 

Before I go into these issues and my opinions on them, please watch the following video on disability uncensored. It is a great documentary that is about fifteen minutes long. It will better provide a background for the rest of this blog. http://www.youtube.com/watch?v=qA020ShNQr8

Although the documentary has a more cavalier attitude about sex than I do, it brings up a good point. Disabled people, myself included are often seen as not having intimate feelings and desires. I cannot count the number of times that I have been out with somebody on an actual date and I get one of the following reactions from people. They ask either, “are you two related?” or “is she working for you?” In the documentary I cited, an interesting point is brought up. When people desexualize people with disabilities it is almost yet another way to treat us as second-class citizens. I am not saying that I go out and sleep with anybody, but I have desires just like anybody else.

There is an even greater problem though, and people with disabilities themselves often perpetuate the problem. If by chance someone with a severe disability happens to find someone who would consider dating him or her, it often never happens. Why is this? I’m only 27 and have not lived life all the way through yet, however with what I have seen I have come to this conclusion. It often never happens because of a fundamental belief on the part of both parties that the boyfriend or girlfriend would have to take care of the disabled person. Who wants that? Nobody wants to be a caregiver; they want a partner, someone they can confide in and lean on, and someone who can care for them. Disabled people are not often seen as being capable of doing this because they are seen as helpless.  We are not. We are capable of many things, but we shoot ourselves in the foot more often than not.

As I said in my the last blog, disabled people set the bar so low for themselves that they allow themselves to be viewed as helpless. Sometimes they even believe this themselves. As this blog has tried to advocate in the past, we are only as helpless as we make ourselves. This holds true in the sexual and relationship arena as well. If we go into it believing that we're going to have a caregiver who also feels for us in an intimate way, we are setting ourselves up for failure. Able-bodied people need to realize something as well. A relationship is not all about the physical. It is about communication. To be blunt intimacy is not often always about penis and vagina intercourse but can be as simple as human touch or as complex as lovemaking. It is all dependent on the couple. One thing that has to change is the lack of communication in relationships, and this I fear is why disabled people have such a hard time nowadays.

Now a day everything is about instant gratification. You cant go five minutes without seeing someone on their phone or updating their Facebook status. For a successful relationship we need to get back to the basics of love. No maybe we don’t need to go to Texas, but we need to get back to the basics of human interaction. Most importantly however, we need to stop selling relationships as a one size fits all thing. People need to understand that judging someone based on their obstacles only causes you to lose out on something great. 

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. 

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. 

CRPD Hearing: Round 1 Aftermath

 Today was the first of two hearings on the Convention for the Rights of Persons with Disabilities conducted by the United States Foreign Relations Committee. The hearing went for approximately two and a half hours. Both sides of the issue were equally given time to present their argument. Senator Robert Menendez of New Jersey did a fine job proceeding over the hearings.
       My the previous blog laid out my position on the treaty as well as the position of approximately twenty-six prominent disabled organizations in the U.S. As I sat and watched the hearings that were broadcast life on C-Span something struck me. Regardless of where one falls in regards to the treaty, the disabled community can only see the hearings as a positive. Not since 1990 has the disabled community’s needs been put front and center. Twenty + years ago this quiet segment of society was given a voice and a great voice that allowed such platforms like this blog to exist.
       Amongst all the debates over how the U.S. was going to be affected by the treaty I kept hearing one theme. The U.S. and the ADA are the gold standards in disability rights. For the first time in a long time, American was acknowledging the positive impact we had made on the world. We might disagree on such issues as how big government should be or even what roles government should play in our lives, but for this one day, we were able to put aside differences and civilly debate an issue. On both sides of the issue, there were bipartisan contingencies. Democrats and Republicans were supporting the treaty as well as forcing their opinion against it. Between all the battling, over whether a United States individual’s right to be homeschooled would be affected I heard one important thing. No one out loud said it but it was still there. The importance of disability and individuals with disabilities, which was not recognized 20 years ago, was again at the forefront of the American political arena today.
       I could get into all the arguments that took place over adding or subtracting political Ruts that would protect America’s laws, but that is not the point of this blog entry.  Although this blog entry is going to be fairly short compared to the other postings I simply wanted to write to express my great thanks to the Foreign Relations Committee for even discussing disability rights on a major stage. I hope that they do pass the treaty because I am a firm believer that the billion people with disabilities worldwide deserve at least the same quality of life that their able-bodied counterparts get, in whichever country they live in.  I understand both sides, but as these supporters said while the hearings closed, “America is a great and powerful nation. We are the best example of disability rights out there. This would be a great way to extend our leadership without negative influence on the international community.” Whether you agree with my opinion or not, one cannot disagree with the point that today and the hearings next week are the beginnings of what can be a great time for disability rights in America and the world.

P.S.: For those who missed the hearings today you can view an archived video session on C-Span’s website or on the Foreign Relations Committee website. You can also keep in mind that the second round of hearings will occur next Tuesday. For those who are not familiar with the Political process these hearings do not signify the United States’ ratification of the treaty rather they are just the first procedural step required to eventually bring the issue of treaty ratification to the floor.