Gaining My Freedom Back: Finally, the Precedented Apathy Has Been Broken

DRUM ROLL PLEASE!

My new power wheelchair arrived!

L ast Tuesday, I received a call informing me that my new power chair was ready to be delivered, and that Mike, the handy and delivery man for the company, could deliver my chair to me that coming Saturday or Sunday. I was extremely astonished, and completely overjoyed. I did not expect my chair for at least eight more weeks. The paperwork that I signed a couple weeks prior, indicated that it would take ten to twelve weeks, from the signing date, to receive the power wheelchair. I was even more astonished when I received a second call; this time it was Mike himself. He explained that if I was available, he could deliver my new chair the following day (this past Friday). And, he did!

In past experiences, the date indicated is always the minimum, and I have never had a power wheelchair delivered to me before the suggested delivery date. The first power chair that I ordered came about three months later; this arrival was right on schedule. The second power chair that I ordered took what see,ed like forever to make an appearance; it was a year in progress. My third power chair -- my first Permobil -- took five months to arrive. It had an electrical error, and I waited almost an entire year for the new Permobil (which was covered under warranty) to be delivered. So, for my new chair to be delivered within a two month time period from the first contact date, is absolutely amazing, and unprecedented.

Last June, I began the process of ordering a new power wheelchair. The power chair that I had at the time had died, and I was awaiting the day that it would be fixed. It was recommended to me that since my power wheelchair had died due to an electrical error, it was probably a good time to start pursuing a new power wheelchair. This sounded like a good idea to me, so I began the journey of ordering a new chair.

In the first days of this whole process, I contacted the Redman company. This is the company that has created the chair that I have desired for many years. This chair not only goes over six miles per hour, reclines, and elevates the foot rests, but it can configure the user into a standing position, but is still a rear-wheel drive chair. When I ordered my second chair, I was told that standing chairs did not exist. When I ordered my third chair -- my first Permobil -- I was told that standing chairs did exist, but only in combination with front-wheel drive chairs. Come to find out, Redman has been around for more than twenty years. The reason why I was told that rear-wheel drive power chairs do not exist is Redman, who makes this exact type of chair, does not contract with any medical supply companies; they do every step of the process themselves, cutting out the middleman (the medical supply company). The medical supply companies that I previously worked with to get my power chairs would have lost my business if I knew about Redman, and this time they did.

I absolutely love my new power wheelchair; I love my chair's functionality, I love(d) working with this company, and I love that I have my freedom back!

Kyann sitting in her new power wheelchair

Kyann standing in her new power wheelchair

Quenching the Curiosity: On Becoming a Parent

The topic of becoming a parent has risen many times throughout my life, more specifically in the past ten years, but many times all the same. I have been asked many time if I can have kids, if I would like to have kids, or other questions along those lines. I do not mind if people who know me ask me these questions, I rather they ask than assume and I am pretty open about most topics. However, I am not as open to random people --- who I do not know --- asking me these questions. I mean, if they ask anyone and everyone these questions, then they can go right ahead and ask me, but if not, it is not appropriate to ask just because I am in a wheelchair.

I am writing this post as I do not desire to be looked at as "different" from any other woman. I also desire for people to be informed, and to quench many people's desire to have these questioned answered. However, I do not hold the same beliefs as all women, so remember, my answers may not carry over as an answer that every other woman would give. Nevertheless, we are all people that would like to be treated as such, so I would advise that unless you ask every woman these questions to refrain from asking them to any woman in a wheelchair.

Here are my thoughts.

There is the question of whether or not I can have kids. Some women who are in wheelchairs cannot have kids, but many can; just like women who are not in wheelchairs, some can and some cannot. My disability does not affect my ability to get pregnant, but there is a question of how my body would react to carrying a baby. However, isn't that question applicable for any woman?

There is also the question of whether or not I would like to have kids. Yes, I would love to be a mother; I yearn to be a mommy one day. Whether this blessing happens via carrying a baby for nine months or fundraising and traveling to meet my child before bringing them home, I am up for either.

Many have been concerned about me having kids, not just for the sake of my health, but for the possibility of passing on my disability. First of all, that implies that my disability is a trait that should not be passed on. My disability may not completely define me, but it is still a part of who I am; it may cause some struggles, but who is born and lives life struggle free? To suggest that my disability should be eliminated, demeans my worth. My other thought is that if my future child is born with my same disability, who would be better than I to be their mommy?

It is also just as likely (or maybe even more likely) for a possible child of mine to be born with a different disability. Anyone has the possibility of having a child with a disability, who contracts cancer or another illness, or has a debilitating accident. Maybe no one should have kids if disability is such a concern.

Gaining My Freedom Back: Introducing the Price of Independence

I have officially ordered my new power wheelchair. The paperwork has been signed, sealed, and sent back to the company.

Due to all the chaotic craziness of my power chair becoming unreliable and then dying, I was advised to begin the process of purchasing a new power chair. I am so thankful that I began this process when I did as even though my power chair was eventually fixed, it has since died again. 

The process of receiving a power wheelchair can take as few as three months. In June, I had my "fitting" (where I am measured in every which way), so that my chair fits to my specifications. I also had an evaluation completed by a physical therapist to deem that a new chair was in fact medically necessary, and to hopefully persuade my insurance to cover the expenses of the power wheelchair. 

About a month ago, I learned that my insurance would cover the cost of the wheelchair, $45,000 (yes, you read that correctly); the pediatric growth kit, $3,850; the seat cushion, $525; tie downs, $800; and, the lateral supports, $220 each. However, this still leaves me with the copay, $3,500. My insurance also declared that they would not pay for the cup holder, $450 (yeah, you read that right too),  nor cover lights, $1,345 (and once again, you read that price correctly as well). 

The insurance not covering the cup holder makes complete since as it is not medically necessary, and I did not expect them to cover it. The lights may not be medically necessary either, but they are incredibly useful. At night, they light up dark sidewalks (and other pathways), which may not otherwise be clearly visible. People who travel via a wheelchair do not have the benefit of using their feet to guide their way in the dark, vision is incredibly important. It would also be dangerous and debilitating to drive off a sidewalk (as most chairs are not made for this). Lights not only increase the visibility for the person in the wheelchair, but of that person as well. Those of us in wheelchairs are on average lower to the ground which makes us less visible. I really believe lights to be a safety precaution (which I would think an insurance company would care about). 

I would love for my insurance company to pay for the lights, but they will not. However, I am more disgruntled by the fact that the lights come with the costly price tag of $1,345. They are just lights. Never the less, that is the price that was listed, so that is the price that my parents paid (so I can have lights). 

Medical equiptment is expensive, and typical things -- like lights -- that have become a part of the medical world, are just as expensive. They can be as there is not a cheaper competition, and most medical supplies are necessary (so people will spend the rediculous amounts of money). 

Now that the oodles of dollars, and my autographed paperwork has been sent off to the company, it could be as few as ten weeks until I receive my new power wheelchair. After dealing with an unreliable chair, and then being without my chair for so long, I am immensely looking forward to my new power wheelchair. The two months will be well worth the wait. 

Medical Supply Companies, Medicaid, and the Madness: Deja Voux, I Have Seen This Tree Before

About twenty-four hours after my power wheelchair was finally returned to me, my excitement of finally gaining my freedom back came to a screeching halt. At about four o'clock in the afternoon, after traveling only a mile or two, I realized that the colorful gage indicating the charge of my chair was informing me that my power chair was going to die. So, I plugged in my chair, hoped that my chair dying was only a fluke, and used my manual chair for the rest of the night. The next day, I faced a similar situation; I again only traveled a mile or two, just to have my chair die.

When fully charged, my power chair batteries are supposed to allow me to travel twenty-eight miles before needing to be charged. Only being able to travel one to two miles before having to charge my chair is not conducive to my lifestyle. It is also completely unnerving to not be able to trust the vehicle that provides my ability to get from point A to point B. My power chair -- when in a working condition -- is my freedom.

Six months ago, I began to loose my freedom. The gage indicating the charge of my power chair batteries began to inform me at random times that my chair was going to die. The Medical Supply Company (MSC), that I was working with, told me that the issue with my chair was the batteries. Fast forward two months after ordering new batteries, they still had yet to arrive, and my chair died. I went searching for a loaner power chair or loaner batteries that I could use while waiting for my own batteries to come; I went to the Lion's Club (LC), a non-profit medical supply loan closet. In contrast of the MSC, the LC actually preformed a set of diagnostics to check out how much life was left in my power chair batteries; the LC deemed my batteries to be just fine, and that there was something else going on with my chair. 

I returned to the MSC, and left my chair with the expectation that the MSC would preform a complete set of diagnostics and figure out what was going on with my chair. It took the MSC four days to let me know that it was the joystick cable, not the batteries, and then it took another seven weeks for the joystick to arrive. However, it was the incorrect joystick that arrived at the MSC, so four more weeks went by before the correct joystick was installed on my chair.

This brings me to last week. I finally received my chair after two and a half months of driving an unreliable chair, and then another two and a half months of not having a power chair at all. I was ecstatic to finally regain my freedom, but now I am right back to where I was prior to regaining my freedom. My chair was fixed, just to have it die again. 

It is ironic that the MSC first said that the problem with my chair was the batteries, just to have the batteries die as my chair sat unused while waiting to be fixed. 

Medical Supply Companies, Medicaid, and the Madness: Finally, I Have My Freedom Back

Oh my goodness, I finally have my freedom back and boy does it feel good! After waiting five months for my power wheelchair to be fixed, and being without it for the second half of that time period, I am so thrilled to have my chair back.

At 4:52 PM, I received a call from Bellevue HealthCare (BHC) informing me that the correct joystick had arrived, that it had been installed, and that my chair was ready to be picked up. However, BHC closed at 5 PM, so if I could make it there before 5 PM, I could pick it up, but otherwise, I would have to wait until tomorrow morning. This left me eight minutes to travel across town in order to retrieve my chair from BHC as they would not wait for me after 5 PM.

I told BHC that I would make it there by 5 PM but the employee that I talked to insisted that I just come pick up my chair tomorrow. Well, I did not listen; I made it to BHC at 5:01 PM. Their doors had yet to be locked and the employee I had talked to over the phone was still there.

I really hope that BHC called right after my chair had been fixed, that the part had just arrived and that the part was just mounted on my chair; however, it is difficult with everything that has happened to give them the benefit of the doubt. It is possible that the joystick had arrived earlier that morning and that BHC could have called me with a longer period of time to pick up my chair.

I am so, so happy to have my power chair back. Two and a half months was way too long.

Disabled or Not?: How Assistive Technologies Are Just Like Glasses

More than sixty percent of the United States' population wears glasses or other types of corrective lenses, but only twenty percent of the population is considered disabled. Glasses have become so common that they are no longer typically thought of as assistive technology, but they are. Glasses are a piece of technology that assist people who have a visual impairment. People who wear glasses technically do fit under the definition of disabled; without their glasses, their visual sense as well as their activities (such as reading) would be limited. So why is it any different for others who use any other type of assistive technology; why are they considered disabled?

Just like glasses are a visual aid that assist people in seeing, mobility aids such as canes, leg braces, walkers, and wheelchairs, assist people in walking; feeding tubes, such as nasogastric tubes (ng-tubes) and gastrostomy-tubes (g-tubes), assist people with eating; technologies such as ventilators, bi-paps, and c-paps assist people with breathing; and hearing aids assist people in hearing. This list could continue on and become exhaustive in listing all the assistive technologies that have been created; there are even other assistive devices that aid people with seeing, just as glasses do. However, glasses tend to be treated with a less demeaning attitude than other assistive technologies. Recently, glasses have even become just as much of a fashion statement as they are an assistive device. However, this is not the case for most other accommodations or aids.

I have a disability, and yes, I use a wheelchair for mobility, but I am no more disabled than the person who wears glasses to correct their vision. I may not be able to walk without my wheelchair, but most people who wear glasses cannot see when they are without them. So, my wheelchair should not be considered any different than a pair of glasses. If I am considered disabled, then anyone who wears glasses to correct their vision should be considered disabled too; if they are not considered disabled -- simply because their vision is corrected by their glasses -- then I should not be either; my wheelchair corrects my inability to walk. With the aid of my wheelchair, I can get from point A to point B, just like anyone else can by walking.

We may all be created equal and should all have equal access, but at the same time we are all unique. Not one of us is the same, and to deem someone who accomplishes a task as abled, while deeming anyone else who fulfills that same task in a different way as disabled, is silly. Accomplishing a task is accomplishing a task; no matter how it is done, it was able to be done. Using an assistive device, like a pair of glasses, can help with accomplishing a task. Even if a person has a disability, they are only disabled when they do not have access to the correct technologies that enable their abilities.

Not being able to walk on my own, and therefore using a wheelchair for mobility, is not what makes me disabled. Not having access to a wheelchair would make me disabled, and the lack of access and the mindset of others is what truly makes me disabled.

No Person Left Behind: How the Liberal Progressive Movement is Forgetting About the Disabled

The other day, a lady -- who identifies as a feminist -- and I conversed about income inequality. She advocates for women's rights, including the right to equal pay. When I agreed with her, she was satisfied, and was ready to drop the conversation. However, I could not contain my curiosity, so I asked her if she knew that people with disabilities are payed sub-minimum wage. See, many people do not know this, and no one -- with the exception of the disability community -- seems to care that it is happening. She expressed that she could not fathom that the government would allow that to happen, and that it must just happen in the private sector. I informed her that in encouraging businesses to hire people with disabilities, the federal government passed a law that allows employers to pay the disabled sub-minimum wage. I went on to explain that this piece of legislation was legitimized by the perception that people with disabilities do not work at the same quality or speed as the general population. She did not seem bothered by this information; she even said that the legitimization made sense. I questioned her on this; I asked her whether all people -- disabled or not -- should be payed based on their generalized ability. She did not have an answer, and the conversation ended there.

Why should the topic of disability -- or ablism -- be treated any differently than feminism, racism or sexism? The conversation I had (mentioned above), is not uncommon; it may be on a different topic, but the theme is still the same. It seems the mentality is as if everyone should have (or maybe even given) access to a happy and fulfilling life, except the disabled. 

This theme was woven tightly throughout the tapestry threads of Western Washington University. As a political science major, I read many textbooks on the topics of environmentalism, feminism, racism, and sexism; the topics of economic inequality and intersectionality would pop up time after time. However, the topics of disability and ablism would rarely bubble to the surface, unless I brought it up.

One of the times that disability made an appearance (prior to my assistance), was when my Economic Inequality professor addressed Social Security. This was during one class period, and was the only day she addressed disability, and she lumped all disabled and elderly people together. She talked about Social Security, but not Supplemental Security Income (SSI); she talked about Medicare, but not Medicaid; she did not inform the class of the savings limit placed upon any person who collects SSI, nor the income limit that people, who require assistance to live in their own homes, have to stay under in order to receive their allotted hours of assistance. She did not address the lack of affordable and accessible housing, nor the number of disabled people who are forced to live in institutions. She also did not share that both the likelihood of a disabled person living in poverty and the unemployment rate of people with disabilities is twice as high as that of the able-bodied population, nor that over eighty percent of the working aged population, who are also disabled, are not employed. This class did however cover the economic inequality, and the intersectionality of racism, sexism, and classism, with the addition of environmental consequences. Despite the disabled population being the largest minority in the United States, and that disability and poverty go hand and hand, the term ablism did not even come up in any of my professor's lessons.

There was also one mentioning of disability in the textbook for my Economic Inequality class. Thrown somewhere in the pages of this book was a statistic (on a scale of 10) stating that on average, a person in a room will rate their level of happiness two points higher when there is a person in a wheelchair in the same room, than when there is not. This means that people feel better about their life circumstances just because someone else is in a wheelchair; this rings pity, and reflects the notion that life with a disability is sad or more difficult than a "typical" life. A random person in a wheelchair -- just like any random person -- should not make anyone more or less happy based on their supposed circumstances. A person, who is in a wheelchair, should make people happy because their company is enjoyable, not simply because they are in a wheelchair; however, this takes getting to know them. The wheelchair should not be a factor in making people feel happier.

The curriculum of my Economic Inequality class did not stand alone. In my Cultural Studies Class, we had a text book that was filled with articles written by a diverse set of authors; there were over two-hundred articles written on race, gender, and class -- all pretty evenly distributed numbers wise -- and there were only three that fit within the theme of disability/ablism. I did however, have many opportunities to address this topic in my class. My professor greatly appreciated my input, and did acknowledged that the book was lacking in the area of disability.

A third time that disability arose in one of my classes, was in one of my Political Theory classes; this occurred when our class addressed the court case Buck v. Bell. This court case rules that Buck, the plaintiff, was allegedly retarded, and therefore, it was deemed appropriate for her sterilization. However, this time, I was given the opportunity to learn how a student felt about people with disabilities. This particular student voiced that he believed that the court was in the right; since this woman was disabled, she should not be able to procreate. His belief about disabled people was strengthened when our professor clarified that this woman was not actually disabled; he quickly changed his mind, stating that he was now in disagreement with the court, and that it was wrong for them to sterilize a woman as she should have a right to her own body. He pretty much was saying that a "normal" woman has the right to her body, but a disabled woman does not. Just the simple factor of disability swayed his mind. I was so mad; I felt like I was going to explode. This time I kept my mouth shut; I just sat their fuming. Today, I wish I had said something, but I did not want to open my mouth as I knew I would not have been able to keep my cool.

One more memory of disability being mentioned, was in my 20th Century German History class; my professor -- as well as some readings -- did include the disabled when listing which groups of people were considered lesser and killed by the Nazis; but that is just it, just mentioned.

These were the few times that the topic of disability came up in my numerous classes at WWU; however, this theme of there being a lack of disability awareness did not end with curriculum, it extended to the classes offered, and the mentality of the campus. Even though WWU offered classes on the study of this group and the history of that group, WWU does not offer disability studies courses. WWU does not offer American Sign Language (ASL) either; WWU does not consider ASL a foreign language. When there were events put on by the Disability Outreach Center, there were at most fifteen attendees, the majority whom had a disability.

The Disability Resources for Students (DRS) also reflected the attitude towards people with disabilities by making inappropriate comments like, "there are other students on campus who have worse problems than you," and not providing students with their accommodations until they are reported to the Office of Civil Rights (OCR). The president of WWU also made his feelings towards people with disabilities clear when he passed both my concerns and I off to one of his six vice presidents. This can be compared to a written threat toward a student of color, that President Shepard addressed promptly, and in which the community grew to know about.

Even though WWU, and Liberal academia and the media in general advocate profusely for allies to come along side all people groups, this theme of just leaving the disabled community to fend for themselves happens time and time again. Not many know about disability policy, or seem to care for that matter.

This is a different story, however,when the topic of euthanasia (AKA Death with Dignity) arises. There are many able-bodied allies that happily come along side the disabled who desire to end their life, but not along side those who desire to live their life. Maybe, just maybe, if the media would stop portraying disability as a terrible fate, and enlighten the world on what it is actually like to have a disability -- that we are just people living our lives -- and in turn, we and the topic of disability would no longer be a taboo subject.

People with disabilities are people, but until we are portrayed as people, our equal opportunities will continue to be denied, perpetuating the terrible image of disability. We will continue to be stuck in this conundrum of: until the world is universally accessible, disability will continue to be considered a horrific fate, but at the same time, until disability is considered just a part of life -- rather than a horrible reality -- accessibility will continue to not be deemed a prominent issue that is necessary to be fixed.

If the world knew that we are people and that our lives do matter, allies would be advocating for us to have an equal opportunity to live life rather than advocating for our right to off ourselves. And if the world began to educate themselves on what life with a disability is truly like, the world would slowly, but surely, become universally designed; the barriers to people with disabilities, along with the justification of their demise, would be eliminated.