But They Said it Was “Accessible"

So yesterday was officially 3 months that the blog has been up. The Facebook page has only been up a few days but at the end of yesterday, we had 887 page views on the actual blog and 54 likes on the Facebook page reaching an outstanding 607 people. It is amazing what 3 months of my writing have produced. I have had help from so many people. Emily Ekstrand, Kelsey Waltz, and Haley Larson. I’ve also had help from a great T.V. show called My Gimpy Life. It is this show and certain life events that inspired me to start writing again. Here’s to more success for the Voiceless Minority as we move forward! However, with all that success and cause for celebration, there are still many issues that need to be addressed.

       As I have written before, the Americans With Disabilities Act was signed into law in the summer of 1990. I will not rehash it again what exactly the act covered (if you would like information on that either visit “ada.gov” or my previous blogs). I simply mention the act here because its 23^rd birthday is coming up on the 26^th of July. When I recently asked the question on our Facebook page about whether anyone had future ideas for blogs this response came up…

       Joe Peet commented on July 6^th and he recommended a blog on “real-time access.” Now for those of you who are new to the disability advocacy fight and I do call it a fight. Real-Time Access is an interesting concept. The idea provides us (the disability community) access to things on paper. What it does not do is clearly defined how that access should be presented. Instead, the language is left broad and ambiguous. In short, the language leaves the decision up to human intuition or interpretation. This is all well and good but I think the idea forgot one very important point to consider. The developers of buildings and producers of products, for the most part, aren’t disabled because we are rarely given opportunities to pursue everyday jobs. That being said, what the majority the able-bodied people consider accessible, oftentimes is not. I don’t mean to offend a majority of readers but I’m just being honest. I will give several examples to demonstrate my point. Some of these examples are my own and some come from others.

       As I have said numerous times, I go to a school in the North Western part of Pennsylvania and that school has its flaws like every other school, but it tries to build itself as one of the most handicapped friendly schools, not only in the area but also in the country. Nothing against that school as they are the institution that will grant me my Master’s Degree in December if all goes well. However, I need to suggest a few things. As far as being accessible, most of the campus is, but crucial portions need to be fixed i.e. the giant cracks in the sidewalks that some power chairs and I’m sure manual chairs have trouble navigating over or around. How is it possible the school can spend money on new dorms but not fix their existing sidewalks to make them easy for a large portion of your population? Also, another issue that is prevalent on campus but is also a cross-venue the issue is the placement of the automatic door and elevator buttons.

I have a tremendous fear of elevators. Yes, I said it. Even though I use them any time I want to go anywhere above the first floor. I absolutely hate them. I don’t know why but I think claustrophobia is genetic or something—no, not really, but thanks, mom! Anyway, one of my biggest pet peeves is not having uniformed elevator buttons either in height or type. I am very short when sitting in my power chair. If I were to stand up straight, which rarely happens, the doctors say I would be 5’10. However, that doesn’t help me when I’m sitting down. There are two buildings in particular that I have in mind when I talk about the elevator button placement and height. One building s a good example and one building absolutely sucks.

       The first building has an elevator button cutout where the button protrudes from the wall and is one of the more conventional buttons you see in medical facilities and hospitals. It, in this case, is white and it is raised off the cutout a little bit. I have very limited hand mobility but even I can press this button by myself. If that wasn’t awesome enough, when I get into the elevator I can even select what floor I want to go to by myself. Sadly, this awesome elevator design is very rare on campus and in real life. At least in places that you need to go on a regular basis and not just when you’re sick.

       The other a building that I mentioned before has a button and it is placed in an area, which only the tallest disabled people can reach. Granted, like I said, I have very limited movement in my hands but there are very few people that I know who can use this button by themselves. There are those in manual wheelchairs who have more mobility than I do who are capable but even some of them struggle. The button is set into the wall and does not protrude from the cutout. I have seen this type of design in many places—movies theaters, Dave & Busters, local malls, and etc. I have a question for developers. Why in the world are these buttons in use still? Maybe I’m being too narrow-minded but, does everyone in the world think that disabled people always travel around with an aide who can push the button for them? The sad fact in my experience is that most people do believe that. As I have said as recently as the “Hey, down here!” blog we desire our independence too. If elevator buttons aren’t where we can use them they are useless.

       Another issue that I’ve seen which is a cross-venue issue is the placement of automatic door buttons. For those who are unaware (and I only mention this because the blog reaches international audiences now and some of you might not have an automatic door) but automatic doors can open with the push of a button which makes it easier for people who are slower or with wheelchairs to enter. There are several types of automatic door buttons but what I don’t understand again is why is there not a uniform type of automatic door button? Maybe it is, with the simple fact that, nobody consulted disabled people when they were designing them. However, I think we should start a focus group and ask disabled people how long on average does it take someone in a manual chair vs. someone in a power chair how long it takes to get through a door. Take the happy median and then set the button time for that! Also in that focus group maybe we could ask disabled people what types of buttons are easier for them to operate? I prefer the round, grey, metallic ones that are offset from their cutout. I hate the ones at my campus library (which some of my able-bodied friends have trouble pressing). Finally, before I move on to a new topic let me express one major complaint. What is it with the placement of automatic door buttons?! I am not kidding. I have seen buttons placed behind where the door opens at i.e. my campus library. Or below an average wheelchair height. Not to offend short people, but we are not ALL so short that you have to put the button by our knees. Enough with that rant. Let me get to an even more disconcerting issue.

       I’m a pretty an active individual with a disability. I like to go out and visit theaters or movies. Or even sporting events. A lot of the able-bodied people that will read this might not understand what I’m about to write about but someone, please explain why all the handicapped seating is in B, F, E! On the one hand, I can understand that the developers might do it to prevent people from standing up in front of us, and for that I appreciate it. A word to developers though, you’ve avoided me being blocked by some really tall glad or really robust person, but now instead of seeing the hockey game that I sometimes pay 50-100 a ticket for I only see little ants. In the case of the movies, you guys are getting better. You put us in the middle of the stadium seating, but you often don’t have enough seats around us for friends and companions. And god helps us if there are two people in a wheelchair in our party. Someone’s feet are getting crushed! I can’t tell you how many times I’ve been run over by another person’s wheelchair just because they are trying to back into the movie seat. Now I know you have a limited budget and limited space, but could you at least give us another inch to an inch and a half? So we don’t have to ask the poor lady who just sat down to get up just so we can situate ourselves? Thank you!

       A final issue I wish to bring to the table is that of the organization of the malls and stores. I do not intend to offend anyone in retail but I just have one simple question. Isn’t your job to attract the most customers’ possible so that you can sell us merchandise? Excluding those stores who discriminate based on weight or body type (coughcoughAbercromeandFitchcoughcough). If this is the case, I think you are missing out on a large population! No pun intended. When I say “missing out” I really mean making it difficult for a large population to enjoy an American past time known as “buying shit.”

       I am not a girly guy but I do like to go to the store and browse. One of my favorite stores to go into is Spencer’s. This is not a kid-friendly store but like many other stores, it is not wheelchair friendly either. I get that you have to have enough space for merchandise, but honestly…? Why is it that merchandise displays have to cover every inch of the store? I am not able-bodied but I’ve even seen able-bodied people that do not know each other have to get super intimate each other just to get by in that store. In fact, because of where I sit sometimes I am cursed with running into certain body parts of people that I really do not want to. Spencer’s is not the only store that fails to give any customer walking space. Another store that is one of my favorites has to be Bass Pro Shop. Forgive, me. That’s the redneck coming out. While Bass Pro Shop has a large center aisle for foot traffic, it like a majority of stores, also places the clothing racks way too close together! Every time I go in there my parents or person I’m with end up having to do the one thing I hate to have people do. They have to help me drive through the clothing racks so that we don’t end up buying the whole store. Part of them probably does this because I’m not the best driver, but I guarantee part of them does it because a 26-inch wheelchair base cannot fit within a half inch space without killing something.

       All that being said, I bring up these issues because they would not only benefit the disabled community if they were addressed but they would benefit the able-bodied community as well. I am going to be very blunt for a second and remind you that this is only my view on things, but it is my belief that some people rarely want to go places with people with disabilities because they don’t want to have to deal with inconveniences such as helping their friend. While I disagree with most of this premise, I do agree that wherever inconveniences arise due to the disability can be altered or should be. Wouldn’t giving able-bodied people more walking room (or in the case of movie theaters) wouldn’t more room lead to more satisfied consumers? Just a thought.

       In closing, I turn my focus back to the disability community. We are an active community given the opportunity. We are tired of sitting in the back of the room and we deserve to be on the front line like everyone else. 

The Difficult Takes Time, the Impossible Just Takes Longer

"Dreams are never destroyed by circumstance. They live or die in your heart. My dreams come true not in spite of my circumstance but because of it...For those of us in this life who are afraid to change, life will change for us. Then it is always a more painful experience...Dreams new dreams or dream old dreams in new ways. Think new thoughts or think old thoughts in new ways...The miracles of our lives do not come about by grand events, but by the little things we have chosen to do...The biggest problems come about because I avoid the little things too long...The difficult takes time; the impossible just takes a little longer" -Art Berg.

I read this quote in a book that I’m reading by Chad Hymas. This is a quote from his mentor. 

Yet again, nothing surprises me. Being disabled you are given a unique set of playing cards. Sometimes a few of those playing cards go missing and you find them later. Then you wonder to yourself, where is that when I needed it? This awful card analogy is the best way I can figure to start this blog. Recently, I’ve had a couple of issues related to my disability. Nothing quite like the one I mentioned in the “It’s All About How You Handle It...” where I went to the bathroom on myself, but a rather frustrating issue none-the-less. 

When you are as physically disabled as I am you are pretty much reliant on others for a majority of your physical needs. At this point, I made it clear throughout some of my other blogs. What I have not discussed is the various aide care philosophies and systems that are available. This blog will not go into detail about the difference between the aide care model, rather it will discuss aide care from person to person. I am with an agency who for the purposes of this blog will be known as “Help At Home.” I have not always been with this agency. In fact, I have not always lived on my own until I came back to Grad School my primary physical care providers were my parents. I believe this is the case for a lot of disabled individuals. However, I do not have some giant statistic number to use. I went to Edinboro during the school year while getting my Undergrad and came home every summer. I lived in a dorm-like every other college student I did my share of fun having and my share of studying. The only difference between my dorm and everyone else’s was the personal care was a part of the package. Due to this unique set up, I believe my parents and I were always skeptical about how I was going to live on my own. I really didn’t have any answers to the questions but I knew that it was an eventual goal of mine. My parents were probably scared out of their wits but they would never tell me that until later.

So how long ago for my fully dependent care system to a functioning disabled individual who is independent, managing my life, and making the mistakes other typical 26-year-olds. Well, let me explain I am not often a logical thinker and I will fully admit that. Sometimes it has driven my parents insane. The idea of me living on my own was no different. It was another summer in 2010 when I was doing the same thing over again, driving myself slowly crazy along with making my parents, especially my dad, want to pull the little hair he had left out. One day I finally decided, screw it! I’m going to go back to school. My parents said, “Well, that’s great but how are you going to do it?” I was used to them finding solutions for me. So needless to say this was a nice kick in the ass. After about six weeks of me hoping they would do what they usually had done, I figured out this was going to be different. 

Now let me make a note about what I’ve said above. I’m not some spoiled rich kid who expects his parents to do everything. I honestly believe in the depths of my heart that a large part of my parents doing everything has a lot to do with my disability. Either my perception is right or wrong, I believe parents with disabled children in some cases want to overprotect them. Not that this is a wrong desire, but it stunts the growth of the individual. I do not fault my mom or dad. They did not know what they were doing just as I would not know what I was doing if I had a disabled child. They did the best they could and now it was time for me to work on myself. 

I found a program, applied, and got in! I was not under any pressure that I could not do the work of Grad School. The biggest hurdle I thought I would have would be the personal care. My parents had two conditions. Either I live at home and go to the University of Maryland and go back to Edinboro or go back to Edinboro and live at the dorms. Well, I love mom’s cooking but the basement wasn’t for me.  So I said I would go back to Edinboro. I don’t think my parents knew at the time but I always had it at the back of my mind that I was going to live on my own by the end of the semester. Towards the middle of the semester is when my parents and I when I seriously began to talk about it. My mom, being the wonderful mom that she is, took great chunks of her life and helped me search for an apartment. Eventually, I found one! Not the best, but not the worst. So now I had a place to live and a school to go to. The greatest struggle of all was not addressed though. 

For those who do not know. It is not easy for someone to get aide care in whichever state they live in. There are waiting lists about 1,000 miles long. It doesn’t make sense to the outside, but that is bureaucracy for you. This is not an advantageous system for someone moving from state to state. I encountered a problem. I would qualify for aide care but it would take about six months for the state to pick up the bill. My case is unique because I was able to have parents that were able to help me pay workers that I had known from the Edinboro dorm community to assist me with aide care. There are days when I’m sure they don’t know it but I am eternally grateful for them for help during those first six months. Without them, I don’t know where I would be.

Once the system kicked in that is where the difference between idealism and reality became apparent. As a parent, I can imagine that one would want their kids to be taken care of to the fullest whenever possible. This is no different for my parents. They to this day freak out when I tell them that an aide showed up late or called off at the last minute. Unfortunately, this is the reality of life when you are disabled and trying to be independent. It is not always 100% squeaky clean but it is do-able. I think a lot of disabled people are hesitant to try living on their own because we are taught as a society to fear the unknown. Let me put it another way.

When you are completely dependent on others for such simple things as eating, using the restroom, or removing the giant snot booger from your nose it becomes tedious to have to wait for someone to come help you. Therefore, most of us, I think in my heart, would rather take the safe situation than the risk of being independent. This may be a controversial statement but I fully stand behind it. Yes, living independently has its own risks. I’ve gone many nights without someone here. Five, to be exact. This number will probably freak my parents out. However, I know many people in my situation who do not have night care because the system does not pay for it. Ideally, we should allegate all the funds in the world that are needed to pay for aide care but living in an ideal world can really blind you to reality. There are ways around hurdles of living independently but in order for the disabled community to become more independent, they must first be creative and have the courage to think independently.

This blog came about because of periods of time over the last week and a half where aides have not shown up. Even my able-bodied friend who is sitting here helping me write this and myself are floored by this but it is the reality of my “Gimpy Life." To steal the title of an awesome web series you should all check out starring Teal Sherer. (http://www.tealsherer.com/Welcome.html). There are days where I scramble for coverage and there are guardian angles that come to the rescue (even when I don’t want them too)! Some days are like hell but hey at least it’s not boring. Parents who read this may be taken aback and this may entice you to be more overprotective but we are just like everyone else. We cannot grow until we fail because it is the failure that the greatest growth occurs. If we want to be like everyone else we must learn like everyone else.