A few months ago I wrote an essay talking about my experiences as a person with a disability and what a typical day looks like for me. I wrote this essay in order to start a dialogue around how we could improve some of these experiences for people with disabilities. As you can see the title of this essay has become the title for my blog. I would like to share that essay with you now in the hopes of starting that dialogue. Please keep in mind this essay is kind of long so please be patient and bear with me. I hope you will learn something from reading this and might have a few questions. Please feel free to share your thoughts with me about this writing so we can start a conversation. Please enjoy my essay entitled “Roll a Mile on my Wheels”
Every day people have to make millions of decisions like, what do I eat for breakfast? What do I wear to school? What project to work on next? For individuals with disabilities they could ask a lot of the same questions, however, people with disabilities must also ask another group of questions that can be vastly different and more complicated. These are the questions that make us have to think outside of the box and be innovative on a daily basis. Some of these questions could be who can I get to give me a ride to the grocery store? Is that restaurant wheelchair accessible? Is there a curb cut on that sidewalk that will make it easier for me to use my crutches? The disability community faces different challenges every day from their able-bodied peers. Unless an able-bodied individual is affected by disability in some way; i.e. a sibling or a friend with a disability, they don’t realize the barriers that people with disabilities face constantly. A fact that many people fail to realize is that the disability community is the only minority group that anyone could join in the blink of an eye. This could be due to sudden paralysis from an accident or an unexpected illness. Everyone needs to start thinking with the mindset of universal design for all so that these challenges and barriers can be permanently eliminated.
The purpose of this essay is to take you inside the life of an individual who has a mobility limiting disability. It will allow all individuals to gain an understanding of the types of hurdles that someone with a disability of this kind faces. Through a better understanding of the disability world, it is the hope that everyone can start to think proactively not reactively about issues such as those that will be highlighted. The reader will be taken through every aspect of the person’s day to illustrate where these challenges exist and to enlighten the non-disabled population regarding the hardships that can and do arise for those who live in this world. This however, is only one recounting of one individual’s day of living with a disability. We cannot cookie-cutter every person who lives like this, which is to say that not every person with a disability is the same. One person may have more mobility than the next or have a clearer speech pattern then an individual with his same disability. These examples are used to illustrate that there is no one-size-fits-all type of disability. This story is not meant to evoke pity, but instead is designed to start a dialogue with everyone on how we can best serve every person in our community whether they are disabled or not.
As someone who is a part of, and worked with, the disability community for most of my life I feel I have a rare understanding of the challenges that a person with a disability must constantly face. My name is Matthew Shapiro and I was diagnosed with Cerebral Palsy (CP) at an early age. My CP generally affects my motor skills and my ability to walk therefore; I use a power wheelchair to get around. As you will see, every aspect of my day, as well as the activities I participate in require me to ask myself similar questions to those mentioned above.
Rise and Shine: The Morning:
The morning time brings about a variety of challenges for me every day. There is a several step process that I must undertake to ensure I am ready to take on the day. Due to my inability to transition from place to place I am in need of full assistance for every activity that I must do in the morning. The process begins as soon as I wake up. Someone must assist me in rolling over in my bed from my stomach to my back; the position I must be in to proceed. I am then transferred, using a ceiling lift, to a rolling shower chair where I am then pushed into the bathroom so that I can take care of my morning restroom needs. Following this I proceed into my roll-in shower and again; because of my spinal fusion surgery, I need assistance during the showering process. Once my shower is completed, while still in my shower chair, I am given time to dry off and then I am assisted in putting on my morning essentials such deodorant and several face lotions. Upon completion of these tasks I am pushed back into my bedroom where I put on an undershirt and get transferred back into bed for dressing. After the process is finished and I’m completely dressed I am finally transferred to my wheelchair where I will spend the remainder of my day. This process, on a good day, takes approximately 45 minutes.
The next step in my morning process is to eat breakfast. After having my food prepared I am able to feed myself and take my daily pills. After I finish my breakfast I brush my teeth, all the essential tools of which have been laid out for me ahead of time (toothbrush etc.) Afterwards I proceed to put on a shirt. This completes my morning routine and I'm ready to attack my day. As you can see there are a myriad of tasks that I, along with my assistant, must complete to have a successful morning and day.
Getting Down to Business: The Afternoon:
The afternoon timeframe usually provides many less challenges then the morning. This is because once I am in my wheelchair I'm a fairly independent individual. During the afternoon I complete work tasks and answer emails and return phone calls. On a normal day when I have no appointments outside of my home, my two biggest needs are for someone to provide me lunch and for someone to assist me with restroom needs. The only other thing that I must consider in terms of accessibility is to know that all the tools/belongings that I may need to gain access to throughout the day are within my reach. These items could be my laptop, a video game controller, a cup for water, or something on my desk. I have gotten in the habit of always putting items in reachable locations. I may also need some assistance if I drop an item on the floor. The only time my afternoon plan may change is if I have to leave the house. This is a topic that I will address later in this essay. The afternoon timeframe allows independence, as this is a time when I don't need as much help from an assistant.
Man, It's Been a Long Day, and It's Time to Wind Down: The Evening:
The evening, like it is for most people, is the time when I unwind from a busy day of meetings or projects. I watch TV or play video games to escape the stressors of the day. When it comes to my accessibility needs, the evening brings about similar challenges as the morning; they just need to be done in reverse order. For the sake of this discussion I will say that most of my evenings begin around 5p.m. After relaxing for a few hours, dinner is generally served around 6 or 7. After having the meal cooked, someone must cut up my food before I can eat it. Once it is cut I can enjoy it on my own. After dinner I usually participate in an independent activity such as watching TV, reading a book, or playing video games until it gets to be bedtime; around 10 or 11 o'clock at night. It is at this time of night when the most assistance is needed. Again, think of this as the morning, but in reverse. My assistant first must help me by removing the top half (above the waist) of my clothes that I’ve worn throughout the day and replace them with the top half of my pajamas. The person then, using my lift, transfers me from my wheelchair to my bed. Next, after removing the lift, and its sling, my assistant must remove my pants that I’ve worn throughout the day and replace them with my pajama bottoms. The last step in the process is to have my assistant help me roll over onto my stomach, as this is the position I sleep in nightly. This concludes my evening process and we begin the entire process over the next day.
Leaving my Home for a Day out on the Town:
As I outlined above, there are several decisions, choices, and tasks that I must complete throughout the day around my home in order to be successful. Additionally, let’s examine what happens when I decide to leave the comfort of my home. I’m very fortunate to have friends and family who often drive my van to a restaurant, a meeting or a movie. Each one of these trips has its own set of accessibility questions that I must consider. The first question is whom can I get to drive me? As someone who can’t drive because of my disability I must find someone to drive me wherever I go. Then, I must consider if my destination is wheelchair accessible on all fronts. Is the shopping center where the store is located accessible? Can I gain access to the sidewalk via a curb cut to get up to the front of the store? Once at the door is there a step up to get into the establishment? Is the doorway wide enough to get my wheelchair through and into the store? Once I am in the retail outlet there are even more questions to contemplate. Can I get my wheelchair around in this store effectively and safely without hurting anyone or knocking over displays? Can I reach items in the store that I may want to look at? Is there an elevator in the store so I can access the second floor if necessary? Is there a wheelchair accessible restroom?
Each location is going to bring about different questions based on where I’m going. If I’m going to a movie for example, do they have wheelchair accessible seating in the theater? Or if I’m going to a restaurant, can I get to the table without disturbing others who are already eating and once I’ve made it do the table does it have legs that allow me entry to the table, and if so, is there enough room for me to get my wheelchair underneath properly? As you can see, like with most things in the disability community, in order for me to leave my house I must first have a strategy in place.
Conclusion and Final Thoughts:
The purpose of this essay is to illustrate the daily life of one individual with one type of disability. We as a society need to adjust our thought processes and become more “cutting edge” by being more proactive in our planning when providing for people with disabilities. We also must remember that people who are aging also fall under the disability spectrum and that this is a minority group that will only continue to grow as the Baby Boomers age. According to the World Health Organization as of June 2014, over 1 billion people, or about 15% of the world's population, live with some form of disability – that’s one in 7 people. We must start a more comprehensive dialogue around the concept of people with disabilities living and working independently and being a part of a completely accessible society. It is my hope that this essay has enlightened you to the struggles that people with disabilities like mine face everyday. I encourage you to think about life within your community and its accessibility. Strive to make changes so that everyone has access to your community, regardless of gender sex or disability everyone wants to feel like they belong. Ask yourself, are you doing enough?