Medical Supply Companies, Medicaid, and the Madness: And the Wheelchair Debacle Keeps on Spinning

It has been a while since I have written, but that does not mean nothing has been happening. To recap what was going on the last time I wrote, Redman, the company from which I purchased my power chair, claimed that my insurance did not pay them the complete amount that my chair was worth. Since then, I have been told by my insurance company that they did pay what they said they would. I was told that it had to do with Redman being out of network.

To my understanding (per Redman's information), Redman was considered in network. When any company is in network with an insurance company, the insurance company has to pay one price; however, when a company is out of network with the insurance company, the insurance company can pay a completely different price -- usually lower or not at all -- than if the said company was in network. Upon receiving the information that Redman was considered out of network with my insurance, I filed an appeal to my insurance company to pay the price Redman desires. That appeal has been denied, and I am now in the process of filing a second appeal.

So who is telling the truth? I have no idea. I do not know who or what to believe. All I know is that the cost of my power chair could still fall on my shoulders, that me continuing to have my power chair continues to be in jeopardy. This also indicates that my insurance does not really care about the wellbeing of their members, and Redman is not so different from other companies that sell wheelchairs after all.

To anyone purchasing a wheelchair (or any piece of medical equipment) through an insurance company, make sure you know the wheelchair supplier is in network with your insurance. It will be one less headache that you will have to deal with during this crazy process. This means you cannot take the medical supply company at their word, you must talk with your insurance company as well. I trusted the supplier, like I had the four times I purchased a power chair before, and for that I was stung.

Just once, I would love to be able to order a chair hassle free, receive my chair in a timely manner, have it be exactly what I ordered, and then not have to worry about anything post delivery (minus the upkeep). Just once. That's all I ask.

Medical Supply Companies, Medicaid, and the Madness: A Continuation of the Wheelchair Debacle

Yesterday, I received two phone calls, one regarding my old power chair, one regarding the new.

The first call entailed my dotor's office explaining that the medical supply company (MSC), Bellevue Healthcare (BH), asked for a prescription for the second joystick that they ordered for my old chair. This is absolutely ridiculous as my doctor had already written a prescription for the first joystick that BH had ordered to fix my chair. BH ordered the wrong joystick, and then had to order the correct joystick. Yes, they did order two joysticks, but the second should be on them. BH should not be allowed to ask for a second prescription. With a second prescription, BH will be able to bill my insurance -- a second time -- to cover the cost of their mistake; they were already paid for the first. This means that my doctor has to take the time to write and send a second prescription. This also means that my insurace is possibly going to double pay for BH's mistake, but it is possible that they will not. I already have my new chair, so why should they be obligated to fulfill the  cost of a joystick for an old chair, definitely if they already recently paid for one. Furthermore, this means that BH could demand that my joystick -- the second one that they had to order due to their mistake -- be paid for. I do not wish to be stuck with the bill, and if I just do not pay it, my credit could be on the line. BH made the mistake of ordering the wrong joystick; they should not be able to place the burden on my insurance nor myself; they should have to eat the cost.

The second call came from Redman, the wheelchair company from which I purchased my new power chair. Redman called to inform me that my insurance company did not pay anything close to what they said they would. My chair was preapproved. This means my insurance agreed to the cost of my chair even before it was ordered. Even though Redman gave my insurance an insanely high quote, my insurance agreed to pay the price and they should follow through with their agreement. Redman, like any other business, wants to be paid in full, especially because they were already told they would be. Just like I do not want to be stuck with the bill for the second joystick (on my old chair), I really do not want to get stuck with the bill for my new power chair. And unlike the joystick, I cannot afford to pay for the cost of this chair. This is why I have insurance!

Both Medicaid and my private insurance have thrown wrenches in the process of obtaining a working power chair, and now continue to make waves even after I have received both my "fixed" and new chairs. I thought the long process was over; I was wrong. Yes, I have a working chair, but knowing companies are continuing to take advantage of the consumer is concerning. These are issues that should not have to be dealt with, but as long as these problems are here, I might as well continue to rock the boat.

Progress Takes Time: Making the World More Accessible One Step at A Time

A couple weeks back, the parking lot of the building that Max Higbee (where I interned) rents was paved. All of the lines were repainted -- except the diagonal lines that indicate the access isle that is to accompany the accessible parking spot. Without the access isle, the "accessible" spot is no longer accessible to many who need that space to exit and enter their car. The international access symbol was repainted in the spot; however, this parking spot -- even with the international access symbol painted on the ground -- was not legally an accessible spot as the sign that is supposed to be at the front of the spot was missing. The line-lacking access isle was also blocked by a bike rack. The access isle was not intended to be a parking spot for bikes.  

The accessible parking spot in the parking lot at Max Higbee Center.The parking lot has recently been repaved, but the sign at the front of the spot (indicating that it is an accessible spot) and the diagonal lines (indicating the access isle) are both missing. There is also a bike rack in the supposed access isle.  

I acquired the e-mail address of Max Higbee Center's landlord. I first introduced myself, and then stated my case. In my e-mail I wrote,

"I noticed that the parking lot in front of Max Higbee and behind the Upfront has recently been paved. The handicap accessible spot caught my attention in that the access isle is no longer indicated with diagonal white stripes. I saw that the lines indicating the parking spots have already been repainted. Has it been planned for the diagonal white stripes to be repainted as well? 

I also have noticed that the bike rack sits partially in the access isle. This does not leave an adequate amount of space for someone who needs the access isle to exit and enter their car. 

Another technicality with the handicap parking spot is that even though the international access symbol has been repainted in the spot, the spot is not legally an accessible spot as it does not have the sign at the front indicating that it is an accessible spot. There is a for lease sign in about the place that the handicap parking sign should be."

The next day, I received a politically correct response of, "I'll look into it." Two weeks went by, and nothing had progressed any further. I asked my advisor to please check the progress of completing the accessible spot. She did. 

A total of (only) three weeks have now passed. I am thrilled to announce that the indicating sign has been rehung on the wall at the front of the accessible spot, and the bike rack has been moved. The diagonal lines have yet to be repainted, but progress has been made. Today, as I was leaving Max Higbee, there was a vehicle parked in the space where the diagonal lines are meant to be, but without that indication, how was the driver to know? This just shows that the lines are there for a reason, and in time, will be painted once again (hopefully without much more pursuit). 

Small steps over time will lead to large progress in the long run. 

There is No Independence without Dependence: The Relationship Between Wheelchairs, the Environment and Mobility

For the past three and a half months, I have used my manual chair for mobility, and relied on other people to maneuver me from point A to point B. My situation of dependence left me with the burning desire for the return of my freedom: my power wheelchair.

My power chair allows me to solely move about and venture into the world with ease. Would I say that I am more independent when using my power chair? To some extent, yes. However, my independence is dependent upon the accessibility of my environment.

When I use my manual chair and come across a restaurant with a step or a side walk lacking a curb-cut, whoever is pushing me, can usually just pop me up or down the step or curb. This is not the case with my power chair. First of all, when I use my power chair, I do not always have a companion accompanying me. My power chair is also quite heavy. It can take up to four strong and competent people to lift my power chair up just one or two steps.

Even though the American with Disabilities Act (the legislation written with the intent of creating an equal opportunity for all) was signed into law over twenty-six years ago, I still encounter building entrances blocked by stairs, and sidewalks that just end. Just yesterday, I ate at Fairhaven Pizza here in Bellingham. The entrance is one step up. There is an alternative entrance, only half a step up, through a different restaurant, and down a skinny hallway. I am not able to enter either way without assistance. (Fairhaven Pizza is a wonderful establishment; they would upgrade if the city would allow them to do so).

Fairhaven Pizza is not the only place that exposes my dependence; Bellingham has many more restaurants and shops that are not accessible to those of us who cannot access stairs. And just like Fairhaven Pizza is not alone here in Bellingham, Bellingham is not alone when exposing people's dependence on others. New York City for one (see previous blog posts on this topic).

Without curb cuts, ramps, and elevators (or a personal team of four strong and competent people), my power wheelchair is just a hunk of junk; without the change in mindset and accessibility, my power chair is no more liberating than my manual chair when I am on my own.

It is not solely the invention of technology that will continue to improve people's lives, but the changes of the social and physical environment that will fulfill equity and justice for all.

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.

9,462 Days: Why 60 More Will Perpetuate the Prevalent Lack of Access

There are a handful of bills in the works that -- if passed -- will, for people with disabilities, perpetuate the lack of access to public amenities and entities. These bills will require anyone who wants to file a legal complaint against an entity in violation of the Americans with Disabilities Act (ADA) to present the entity in question with a written statement specifying the exact violation sixty days prior to pursuing any legal action. This provides the entity in question with an opportunity to comply with -- or begin to comply with -- the ADA; if the entity shows progress towards complying with the ADA, then there is no longer any chance of pursing legal action against that said entity.

These bills were written with the intent of preventing unnecessary lawsuits that are pursued by lawyers simply to gain a profit. Sen. John Kavanagh, R-Fountain Hills, who sponsored the bill that has been introduced to the Arizona Senate, suggests that a hotel loosing money over not providing an accessible pool lift is not acceptable. However, it is documented that hotels are legally obligated to provide such amenities -- as an accessible pool lift -- as entities are required to provide equal access to all amenities provided to the public -- including hotel pools.

The ADA was passed on July 26, 1990; this document is law, and should be treated as such. It has been a part of legislation for over twenty-five years - a long enough period of time for entities to have become aware of this set of standards, and to comply with any that pertain to them. Entities have had a 9,462 day notice, so they should not need 60 more. I have encountered many entities that have ignored the ADA, and now there is this set of potential legislation that will allow entities to continue to be in violation of the ADA, but their violations will now be deemed acceptable with no legal consequences.

A perpetuation and validation of discrimination towards people with disabilities will not be the only problem that could occur if any of these bills are passed; a precedent will be set. Other bills could be passed to allow people or entities to require a 60 day notice stating the law in which they are violating prior to being prosecuted or sued.

Take speeding for example. Speeding is against the law. If a person is pulled over, it would not be considered reasonable for the person in question to request a 60 day notice informing them that they are in violation of the speed limit, and need to upgrade their driving tendencies in order to dodge a ticket. This would be ridiculous. The person already broke the law; they were speeding, so they should face the consequence, a ticket.

So, why should it be any different for an entity in violation of the ADA? The ADA is law, just like the speed limit. If an entity is in violation of the ADA, they are already breaking the law. They should not have a chance to right their wrong before being sued. This is not right.

A situation that may be a more relevant topic to compare to this bill is the recent passing of state legislation that either protects or prohibits businesses from denying services to the LGTBQ community based on their religious beliefs. In 2014, the Court of Colorado deemed the bakery, Masterpiece, in violation of a couple's civil rights when denying them access to services -- a wedding cake -- Masterpiece was told that they could continue displaying their beliefs, but they could not deny access to services to one person(s) that they provide to others. In the same year, Arizona's governor vetoed a bill that would have allowed businesses to deny services to anyone based on religious reasons. Though Arizona decided against this bill, they are still in consideration of passing the bill (stated above) that would allow entities to discriminate against people with disabilities by not providing them with equal services.

Arizona is not the only government with this type of bill. If passed in any state -- or at the Federal level -- these bills will make the ADA irrelevant, in turn pushing positive progress made toward a more accessible world, backwards.

Medical Supply Companies, Medicaid, and the Madness: A Third Update of the Continued Debacle

Seven weeks.

Seven weeks have passed since my power chair died, and it is still not fixed.

When my chair died, I encountered a conflict with Bellvue Healthcare (BHC), my medical supply company (MSC). Two months prior to my chair dying, I knew something was wrong with my chair. I took my chair into BHC; they informed me that it was time for new batteries. However, after not receiving new batteries for two months, my chair died. When my chair died, I found out that the problem was not actually the batteries, but the joy stick cable. I waited two months for batteries, just to find out that the batteries were not the issue. And, this was just the tip of the iceberg.

Two Fridays ago -- five weeks after my chair had died -- I received a call from BHC informing me that my chair would finally be ready to pick up the following Tuesday; I was so excited! I waited those four days with great anticipation, just to get a call saying that yes, my chair was ready to be picked up, BUT that the wrong joy stick had been delivered. I was told that I could use this joy stick until the correct one arrived, but that this loaner joy stick would solely turn on/off and drive my chair but would not operate the rest of the features on my chair. After waiting so long, I desperately desired to instantly go pick up my chair. However, after seeking council, my mind had been swayed, as I had determined that I needed to continue waiting to pick up my chair.

Here's the thing, if I picked up my chair with the wrong joy stick, BHC would no longer be obligated to do anything; they would have "fixed" my chair, and that would be that; I would never receive the correct joy stick, and I would be stuck with the one that was sent instead.

When the joy stick was ordered, someone made a mistake; either BHC filled out the order form incorrectly, or the distribution company misread the order form and sent the wrong joy stick. I will never know who made this mistake, and I do not need to know. All I want is for whoever made this mistake to fix the problem in a timely manner.

Another week has passed since the disappointing phone call. I have waited almost four months for my power chair to be fixed -- two months for batteries, and then seven more weeks for the joy stick -- and it will probably be another two to five weeks until the correct joy stick arrives. Until then, I will be waiting for my freedom to be returned to me, but still living my life, everyday.

Me Before Youthanasia: Why Me Before You is Not Just Any Romance Story

Am I a burden on society?

Is my life worth living?

Does my life really matter?

These are questions that have crossed my mind from time to time, but are questions on which I do not constantly dwell; however, they have recently surfaced from the recesses of my brain, and I have again addressed them, not because I am depressed, nor because I do not wholeheartedly know the answers, but because I have been recently reminded of how society views "my" life, and the topic of disability and euthanasia.

There is this perception that people with disabilities are better off dead. This idea is perpetuated by misconceptions, due to a lack of education, of what it is actually like to live with a disability. So, I am writing to share with you my perception of living with a disability. 

I use a wheelchair for mobility and need someone help me achieve my everyday tasks. However, using a wheelchair and needing assistance do not define my entire life. There are so many more things that make me, me. I am not just a disability, I am Kyann. I do not view my life as any more-- or any less--important than any other person's life. However, this viewpoint may not be shared by outsiders looking in.

I have been told by random people that they would rather die than live my life. Some may have a good intent behind sharing this information with me (as they are inspired by me simply living my life); however, this perception can be interpreted as my life is not worth living, and that I am better off dead than disabled. Is this comment really appropriate? I mean, sure, my life can be difficult at times, I am not going to deny that, but who's life is not? I have witnessed many people go through rough situations, and even though I may not have envied them, never did I view their trial as worse than death. Their life--and every life -- is sacred and worth living.

This idea of "better off dead than disabled" is driven by misconceptions broadcasted to the world by the media. Movies are greatly influential (even when they are fictional). Hollywood is sorely lacking in movies that represent the diversity within the disabled community. There are documentaries (not necessarily produced by Hollywood, but still a part of media) about people with disabilities; however, they are poorly circulated, and many push the pity agenda while portraying the disabled as inspirational heroes. I have never watched a movie where a disabled person was the main character, who was played by a disabled actor, that did not end with the disabled character choosing to end their life. Just once, I would love to watch a mainstream movie, that portrays a disabled character in a positive and accurate light.

Whose Life is it Anyway, Million Dollar Baby, and now Me Before You, all perpetuate the perception that it is better to be dead than disabled. These movies flaunt the perception that disability is a burden, but ironically these movies are actully burdening the disabled. It is important for people to understand it is the social stigma that stands in the way and hinders people with disabilities. If the world views the lives of the disabled as so horrible--beyond worth living--then there is no reason to provide equal access and opportunity to the disabled population; since disability eliminates the quality of life, the disabled would rather die than have access to enjoy life. On the contrary, overall, my quality of life has not been diminished nor eliminated due to my disability. If anything, my quality of life has been most affected by a lack of access and the misinformed perception of people with disabilities.

One of the problems with Me Before You is that there are not movies with which to make a comparison. This story is just one person's opinion, and I am not opposed to someone sharing their opinion; however, when there is nothing with which to cross check an opinion, and people are poorly educated on the topic of the opinion (in this case life with a disability), the opinion can be misinterpreted as fact. And, with regards to Me Before You, it is especially important to understand that the author, Jojo Moyes, did not do her research. This story does not interpret how life with a disability is really like. For one, misusing/making up medical terminology is not acceptable (as this information is readily available), and even more importantly, not every person with a disability desires to die.

When Will Trayner follows through with his decision to end his life at the end of Me Before You, he may have ended his physical pain and suffering, but at the same time, he ultimately legitimized the perception that life with a disability is a horrid reality. Disability is not typically the horrid reality that Hollywood portrays; it is not the disability that is the hindrance, but rather the mindset of society.

In contrast, throughout the storyline, Trayner encourages Louisa Clark (his caregiver), to better herself and to live boldly. Clark, who had been gang-raped as a teen, struggles immensely with her emotional pain and suffering. Both these life experiences are physically and emotionally scarring, both need healing; but who has the right to say one should live and the other should die?

Me Before You is not just another romance story; it impacts my reality, my everyday life. Here's the deal, anyone--disabled or not--could be depressed and feel unworthy of living. However, when people who do not have a disability have the overwhelming desire to end their own life, there are suicide hotlines, psychologists, and psychotherapists ready to help and access to medications; and if a person does lose their battle to depression, it is a tragedy.

However, if a person with a disability desires to die, it is considered a dignified act; there are not preventative steps, there are just "helping" hands to guide the disabled person on their way. And, when the disabled person slips away, there may be sadness, but it is not considered a tragic event, as the disability was the "tragedy".

So, am I really better off dead than disabled?

I am totally in disagreement with the message being portrayed in the storyline of Me Before You! Poorly researched information creates a misperception of what it is like to live with a disability. I may get frustrated due to the ignorance of uninformed people, and from not having equal access to buildings or job opportunities; and yes I do experience pain, but I love my life and I intend to live it to the fullest.

So, no! The answer is I am NOT better off dead than disabled.

The Bathroom Beat: Lack of Physical Access Makes Me Physically Uncomfortable

Here in the United States, bathrooms have recently become a hot topic that has swept the nation. The matter of whether someone should be comfortable while using the bathroom has been thoroughly discussed; however, the fact that many public restrooms are not physically accessible to all people -- whether due to a barrier blocking the bathroom, there not being an accessible stall, the accessible stall not actually being accessible, or just not having the equipment or adequate care to use the public bathroom altogether -- continues to be overlooked.

In 1990, the Americans with Disabilities Act (ADA) was passed by both the House and Senate, and then signed into law by the president, George H. W. Bush. Over twenty-five years have passed since the ADA became the legal standard for accessibility, but the goal of the ADA -- creating equal access for people with disabilities -- has yet to come to fruition. The ADA addresses the topic of bathrooms and provides a set of regulations that are required to be met. However, these standards are poorly regulated, leaving bathroom accessibility to the discretion of ignorant people. This can mean that pathways leading to the accessible bathroom can be blocked, or even if all pathways are clear, there may not be an accessible stall at all. And, even if the bathroom is completely up to ADA standard, there only needs to be one. This often means that the stall is full, or if it is out of order, there is no other option. Accessible stalls also make great makeshift storage closets (due to all the "extra" space); however, with stuff stored in the stall, it causes the stall to no longer be accessible. These are a handful of bathroom barriers faced by people with disabilities, and there are many others that we may run into when needing to use a public restroom.

The weekend before last, I ate breakfast at the Varsity Café in Seattle, Washington. I encountered a bathroom that could technically be considered ADA compliant, but with all the physical barriers in place, it was almost inaccessible to me (and would not have been if I had been using my power chair, or would not be to most who use a mobility aid). There were two pathways leading to the bathroom. The first pathway travels through the café. At the back of the café, the pathway becomes narrow; the pathway squishes between a booth and the back wall. The pathway is even more narrow than necessary due to equipment stacked up against the wall. This pathway would be ADA compliant if it was not for all the stuff; the pathway has an eighteen inch wide clearance, when it is required to have a thirty-six inch wide clearance (the width is only half of what is required). Past the skinny path, there is a door; through that door, there is a hallway that leads to the bathrooms. The second pathway also leads to that same hallway; however, traveling this pathway involves exiting the café, following the sidewalk for a portion of the block, and reentering the building through a different set of doors. This pathway could also be completely ADA accessible, but was not, simply because the doors were locked. Two simple fixes, for two potentially accessible pathways to the bathrooms; fixing either would suffice, and fixing either would be relativity inexpensive. These are the barriers that are most concerning to me; when there is an inexpensive barrier that is simply there due to sheer ignorance and not a cost, there is no reason for the barrier to exist, and it should be removed.

When entering the bathroom, I encountered more barriers. In the "accessible" stall, the changing table is freestanding (it does not fold out from the wall), and there was a shop-vac in the middle of the floor; the stall is the correct size, however, with the changing table and the shop-vac, the floor space that is required to maneuver is no longer met. If I would have been using my power chair, I would have not been able to fit in the "accessible" stall; I was "fortunately" using my manual chair (which is smaller than the average mobility aid), so I could squish in the stall -- along side the changing table and the shop-vac -- and use the bathroom. Removing the shop-vac would be an easy fix (as it does not need to be stored in the bathroom stall). However, removing the changing table would not be as easy of a fix, as I understand there needs to be a changing table -- just like there needs to be a proper amount of maneuvering space in the bathroom -- and installing a changing table in the wall would be pricy. Never the less, this would be a way to both have a changing table and abide by the ADA.

Even though the ADA has been around for over twenty-five years, incidents like the barriers at the café are not uncommon. I have encountered bathroom barriers in many restaurants, universities, stores and other public places; physical barriers continue to prevent people with disabilities from accessing public restrooms. When I am out in the public and I am physically unable to access the bathroom when necessary, I am physically uncomfortable, and do not even have a choice to utilize the facilities.

Accommodations and Barriers: A Teaching Opportunity

Yesterday, I had the opportunity to speak with a class of students from Japan attending Western Washington University (WWU). This week they are learning about disabilities, as well as, accommodations and barriers that people with disabilities may encounter on a day to day basis. The students asked me questions, and I was able to share my personal experiences of having two disabilities, and at the same time, advocate for an equal opportunity for those of us who are disabled.

The first student, who asked a question, inquired about when I graduated from WWU (they had been previously informed that I had attended WWU). I answered by telling the class that I had graduated the previous March, so March 2015.

The second student, who asked me a question, asked what my major was. I told the class that I majored in Political Science. I learned that in Japan a Political Science major is called a Law major.

For the third question, a student asked about my interests and hobbies. I explained that I love to write, and I have a passion for advocating for people with disabilities; I talked about this blog, and how I love to post my thoughts and experiences. I also mentioned that I enjoy spending time with my friends and going to coffee. Traveling, listening to music, and watching Gilmore Girls round out my hobbies and interests!

When answering question number four, I had the chance to talk about my dreams for the future. I shared how I have the desire  to one day start a non-profit or business that would have the capacity to teach corporations and businesses how to hire people with disabilities. I explained that many people with disabilities are looked at as a liability and an expense to a company, but if provided with the right information and resources, this should not be the case. However, corporations may be ignorant to what is available, and therefore, not hire people with disabilities. I informed the class that both the unemployment rate and the percentage of unemployed, working-aged people with disabilities are quite high especially when compared to that of the able-bodied population.

The next question -- my favorite question -- is a question that is so easily asked by children, but has been deemed rude and unacceptable to pass through one's lips. However, I encourage people to ask this question. When one student asked what disabilities I have, I was happy to answer her. I not only explained to the class that I was born with a neuromuscular disorder that affects my nerves and muscles that causes me to be unable to walk along with some other things, but that I appreciate when people ask this question. I understand that people are curious -- I am curious -- and I would rather people ask, or allow their children to ask, what is wrong with me, rather than shy away, as I can then share that nothing is really wrong with me, but that I just get around in a different way. I also explained to the class that I am legally blind, but according to doctors, this is not caused by the neuromuscular disorder.

A second part of the fifth question consisted of the same student asking what accommodations I have received that have helped me throughout my life. I touched on how my power wheelchair is one of the greatest pieces of technology that I have been able to utilize. I talked about how my wheelchair gives me the freedom to have mobility, and independently venture from place to place. I explained that just like glasses give many people the ability to see, my wheelchair gives me the ability to walk; similarly, when a person who has 20/20 vision with their glasses on is not considered disabled, I am not disabled until there is an access barrier. It is not my disorder that makes me disabled, but the lack of accessibility around me.

The last question I was asked may appear as having a complex answer; however, this is not the case. I was asked how someone should interact with a person with a disability. The answer: the same. I explained that a person with a disability is a person, and therefore, when one meets a person with a disability, they should interact in the same manner as when meeting any person.

After the session of questions, I had the opportunity to participate in a scavenger hunt finding accommodations and barriers on WWU's campus. I showed the class that the main entrance to the Communication Facilities (CF) is not accessible, and the route I have to take in order to access the building. I showed them that even though there are two elevators in CF, only one provides access to the parking lot (and this is not indicated by a sign). I also mentioned that I cannot open any inside doors.

After leaving CF, we traveled toward the Environmental Studies (ES) building (the students were on their way to Smate), and came to a flight of stairs. The professor challenged the students to figure out how I was to overcome this barrier to reach the upper level of the walkway as there is no sign indicating an accessible route. After a long pause, one student suggested that I use the elevator in ES. So, the majority of the class climbed the stairs, while six of us ventured into ES to utilize the elevator. When in the elevator, I was able to show the handful of students I was with that some of the buttons were too high for me to reach -- this could be another barrier.

I believe it is important to educate people about disability; without education, there is no chance of gaining an equal opportunity in life. As long as people continue to be ignorant about disability, it will continue to be a scary taboo, a topic that no one wants to talk or think about. Disability needs to be yanked out from under the rug; this raw subject needs to be exposed. Disability cannot afford to be ignored; it is a part of life.

So, thank you, Laura and the AUAP Yellow class at WWU, for letting me have the opportunity to speak to your class!

Me with the AUAP class in front of the Communication Facilities building 

on Western's campus. 

Medical Supply Companies, Medicaid, and the Madness: A Second Update of the Continued Debacle

Here we go again.

Yesterday, after not hearing from Bellevue Healthcare (BHC) for three days, I gave them a call; on Tuesday afternoon, my mom took my power chair to BHC to have a full diagnostic test preformed on it, but after three days of waiting, I decided that I had given them a sufficient amount of time to figure out what is wrong (or at least tell me they cannot find anything wrong) with my chair. 

When I called, the tech who said he would perform the diagnostic test, was not there. About fifteen minutes later, I received a call from that same guy; he informed me that the problem with my chair was a cable that is a part of the joystick, not the batteries. I requested that a new joystick be ordered. I also asked if the prescription -- indicating that I do indeed have a power chair and that I am in need of new batteries -- that my primary care physician faxed to the main BHC office, would be sufficient for Medicaid when ordering a joystick rather than batteries. The tech said no, and that my primary care physician should send a new prescription indicating that I am in need of a new joystick. I thought this would be the case. 

So, the two months that I waited to get new batteries has been a waste. Yes, even if BHC would have preformed the diagnostic test to begin with, I probably still would have had to wait on Medicaid, but at least the correct part would have already been in the process of being ordered. However, the two months could have been a shorter wait if BHC would have actually tried to figure out why Medicaid kept denying the approval of purchasing new batteries, sooner than they did. Fortunately, there is a positive side to this; if Medicaid had approved the new batteries right away, they would have arrived and not have been the solution to the problem. It is very possible that Medicaid would not have approved the joystick after sending new batteries. Never the less, both Medicaid and BHC have been culprits of not doing their job, and in turn, making me, the consumer, go to extreme lengths to get the product that I need. Neither Medicaid, nor BHC, act like other businesses; they know that those of us with disabilities need them, so they do not have to persuade us to utilize their services. The system is so far from being sufficient, and does not care about the people it was put in place to assist.  

I tried to be preventive; I went in to BHC when my chair began to act wonky. There is no reason that it should have taken this long to get where we are now. I feel as if I am back at square one, even after waiting for two months. I do not have any idea of how much longer I will be without my power chair -- my means of freedom -- and I do not even want to imagine how long it would have taken to fix my power chair if I would have waited until my chair actually died to begin this grueling process. 

I am absolutely sick of this system. 

Medical Supply Companies, Medicaid, and the Madness: An Update on the Debacle

The drama continues.

When Bellevue Healthcare (BHC) informed me that Medicaid did not have any record of me having a power chair, I made a request to my primary care physician to write a prescription and fax it to BHC, for Medicaid, indicating that I do indeed have a power chair, and that I am in need of batteries.

This past Monday, the prescription was faxed to BHC. At this point, the end of the waiting game seemed to be in sight; however, right after receiving the e-mail from my primary care physician indicating that the prescription had been sent to BHC, I was given new information that has thrown me for a loop, and I am unsure of what to do next.

While waiting for new batteries, I decided to utilize a local loan closet here in Bellingham, the Lion's Club. They were going to loan me batteries until I could get new ones, but when they checked my chair over, they realized that my batteries were just fine.  So, loaner batteries would not be beneficial to me. However, two months ago, when I described what was going on to the vendor at BHC, he was positive that the problem was the batteries. At that time, I should have been adamant that a full diagnostic test be preformed on my chair, but the guy at BHC is the expert, and I did not know any better. I do now.

Right after the Lion's Club told me that my batteries were fine, I ventured back over to BHC. My mom went in for me, and relayed the information (that the Lion's Club gave us) to BHC; she told them that the batteries were just fine, and that something else -- something unknown -- was causing the problem. She explained that we did not want to order batteries if the batteries were not the problem; we wanted them to first confirm that the batteries were in fact the problem, and then order new ones. However, they were too busy to help us, so my mom asked when a good time would be to bring back my chair, but they could not give her an answer.

I later received a call from the main BHC office; I was at lunch with a friend, so I did not answer. The same lady then called my mom (she has never called Mom before...). When my mom confirmed that we now wanted to wait to order batteries, the lady yelled at her. This lady was upset that after all the leg-work that they had done for us, we now wanted to hold off on getting the batteries. That is her job; she is paid to be a liaison between Medicaid and people who need medical supplies to be successful throughout the day. This whole situation barely touches her life, it is a little inconvenience to her while at work, but this is my life. So, please tell me why she has any right to be upset.

The lady at BHC also could not understand what my mom was talking about when she mentioned that we just now found out that the batteries were fine. Apparently BHC wrote up an entire report saying that they took my chair, did a full diagnostics test on it, and then came to the conclusion that my chair batteries were indeed dead. First of all, BHC did not take my chair; I offered to leave it, but the guy was adamant that it was the batteries. Second, no tests were preformed on my chair; all I did was explain what was going on, and it was obviously a battery problem. So, I ordered new batteries. The report was written because that is part of the procedure in getting new batteries; however, one important step was skipped. Actually checking the chair over may have been an important thing to do in the first place.

I also finally heard back from Northwest Regional Council (NWRC). A lady who works with my case manager, who is authorized to assist me, gave me a call. She was confirming what was going on. I am pretty sure that NWRC finally contacted me back in response to the call my counselor from Division  of Vocational Rehabilitation (DVR) made to my case manager at NWRC. Last Friday, I e-mailed my counselor at (DVR), and explained everything that was going on. She e-mailed me back Monday morning, and said she did not have any more ideas about what to do, that I had not already done, but she would give NWRC a call. She did, and NWRC responded! My counselor at DVR also said that DVR would help cover costs to repair my chair (which is legal).

Yesterday, BHC did call (after being called by NWRC), and asked my mom to bring in my chair. They are now going to do a full diagnostic test on my chair, and try to figure out what is actually wrong with it. Next time, I will insist that this is done in the first place.

Here's to continuing to play the waiting game, and praying that my chair can be fixed, and fixed quickly!

Medical Supply Companies, Medicaid and the Madness: My Debacle of Needing New Batteries

After two months of pursuing new batteries for my power chair, my chair has died. Back in February, I noticed that the gage on my chair -- that indicates the charge of the batteries that run my chair -- was acting wonky. This gage consists of three green bars, four yellow bars and three red bars. Typically, the bars gradually disappear to indicate the charge that is left in the batteries; it usually takes about twenty-five miles of driving to completely drain the batteries. However, on the day I began to notice it acting wonky, all of the green bars would all of a sudden disappear, then all the yellow bars would follow, then two of the red bars would disappear as well, leaving one blinking red bar (and this is all within a mile of driving my chair). The bars would then appear again -- without charging my chair -- which is not normal.

At the time, I lived near a medical supply company (MSC), Bellevue Healthcare (BHC), and I instantly went to this MSC to figure out what was wrong with my chair. BHC confirmed my suspicion that it was the batteries, and that they needed to be replaced. So, I ordered new batteries and I left. 

BHC informed me that it could take up to three weeks to receive the new batteries after my insurance company approved the order. BHC also told me that they would contact me when my insurance company did confirm the order. A week after I placed the order, BHC had yet to call me. When I checked in, the MSC told me that they had not contacted me because they had not heard back from the insurance company.

When two weeks had past without hearing back from BHC, I contacted them; when they still did not have an update, I called my case manager at Northwest Regional Council (NWRC). However, she was on vacation, and I just ended up leaving a message. I waited for the week and a half that my case manager was out of the office, and when she did not call back on the day she said she would be back in the office, I gave her another call, but ended up leaving her a second message. She did not call back.

By this time I had called the MSC a couple of times, and had learned that it was not my primary insurance, but Medicaid that was not approving the batteries for my chair, therefore, slowing the process. Since I had not gotten anywhere with BHC, and had yet to hear back from my case manager at NWRC, I gave her a third call, and left a third message; she did end up calling me back, but I missed her call, so she ended up leaving me a message. In the message, my case manager explained that she would be in the office from 1:00p.m. to 3:00p.m. the following day, and to give her a call back during that timeframe; I called her at 1:10p.m., and she was not there. I ended up leaving her a fourth message.

Around the same time, a couple of weeks ago, I received a call from the main office of BHC, the MSC that I am working through to get the new batteries; the lady who called me said she was concerned that I was still without new batteries, but informed me that Medicaid had still yet to approve the batteries, and that they -- BHC -- was doing all they could do to speed up the process.

Fast forward to two nights ago, my chair died; I was going along with my business, and my chair just shut off. I had my mom flip the switch on the back of my chair, off and back on again, just to see what would happen. Unfortunately, this did not do anything, so I had her plug my chair in to charge. Charging did not help either; when the charger was plugged into the chair, it displayed the fault light, and then shut off. This is not normal; when the chair is charging, a red light and green light turns on. Then as the chair begins charging, the red light turns off and the green light begins to blink. It blinks faster and faster until the light stops blinking and becomes solid green indicating that the batteries are fully charged.

Yesterday, I spent the day trying to find out what was happening with the entire battery process. I called my case manager from NWRC for a fifth time; when I could not reach her, I asked my mom to call someone else from NWRC. I called the lady from the main office of the MSC, and my mom said she would talk to someone at NWRC.

The lady from BHC informed me that she had contacted Medicaid every week since I had ordered my new batteries; she explained that is all they could do, and that I could call Medicaid myself and try to speed up the process. I asked if there was anything else that could be done. If it was legal, I would just pay out of pocket for my batteries. However, I can not do this; because I have Medicaid, it is against the law for any MSC to charge anyone with Medicaid. The lady at BHC told me that if someone who was not related to me or lived in my household sent the MSC a check for $469.90, then that would cover the remaining costs (that should be covered by Medicaid), then the batteries could be ordered and sent to the branch of the MSC near me. I questioned the cost as my understanding was that my primary insurance was covering eighty percent of the battery cost, leaving Medicaid with just twenty percent. I questioned the price as I thought $469.90 was quite high for being twenty percent of the total cost of batteries; I know medical supplies are expensive, but not that expensive. It turns out that my primary insurance company is not covering the eighty percent that they would have otherwise if I had met my deductible for the year (which I have not).

Since the lady at BHC suggested that I call Medicaid, I asked my mom to call Medicaid for me and ask them about the progress of my batteries. The guy at Medicaid pretty much told her that it was solely the MSC's job to contact Medicaid, therefore he could not help us! So, the MSC told me to talk to Medicaid, but Medicaid said to contact the MSC and have them pursue the process of ordering batteries as that is their job, not the consumer's.

My mom also called NWRC and asked to talk to someone; she explained what was going on, and that I had been trying to get in contact with my case manager. Even though the lady who my mom talked to was really nice, she informed my mom that she could not help us as she was not my assigned case manager, and that we would have to wait for my case manager.

Today, I received a call from a different lady from the head office of BHC, the MSC that I am working with to get my batteries. She informed me that the reason that Medicaid was not approving my new batteries was due to them not having any record of my power chair. It turns out that when I purchased my power chair, my primary insurance covered the cost of my entire chair, and the MSC that I purchased my power chair through, bypassed Medicaid altogether; this sped up the process then, but unfortunately is complicating this process now.

When I was 18, I was advised to sign up for Medicaid; if I waited until I could no longer be on my dad's insurance through his work, then I would probably not be able to get Medicaid in a timely fashion or at all. However, I am rethinking about how beneficial it really is to have Medicaid; primary insurance has covered all my power chairs; when I have needed other parts for my power chair and my primary insurance has not covered those costs, NWRC covered them (but they do not have money allocated to do that anymore). When I have gone to specialty doctors, Medicaid did not cover the copays either; the only thing Medicaid has covered is a few regular copays I have had to pay in the last five years (but not all of them). I am grateful for these costs being covered, but if Medicaid is not going to cover the majority of my medical costs not covered by my primary insurance, and the system has made it illegal for MSCs to charge me out of pocket, I do not see the point in having Medicaid -- even when I no longer have private insurance through my dad's work.  

I am stuck. I am without a way to get batteries; I cannot buy batteries because I have Medicaid, and Medicaid will not purchase me batteries because they do not have a record of me having a power chair. Without batteries, I am without my power chair; I am without my independence and freedom. I feel as if the system does not want people with disabilities to have access to an equal opportunity, and therefore not be successful in life. I need batteries to be independent, to go out into the community and be apart of society, but when I do not have access to batteries, I am trapped, and forced to be hidden away. When I am out of sight, I am also out of mind; no one has to see me anymore, and they do not have to wonder about me anymore. When I am hidden away, I am forgotten. No one assists the forgotten, and I will be trapped forever.

Equality Over Special Treatment: Why I Feed the Parking Meter in Downtown Bellingham

I park in Downtown Bellingham quite a bit. The accessible parking is terrible; accessible spots are far and few, and when an accessible spot does exist, it is not up to code. This has been justified by making all parking  -- accessible or not -- free to any person who has an accessible parking placard or license plates. However, this solution does not solve the problem of making parking more accessible; it actually perpetuates the problem.

The city no longer views accessible parking as an issue that needs updating; if people who need accessible parking are given the privilege of parking anywhere for free, then there is a belief that there is no longer a need to provide adequate accessible parking. This belief reflects the logic that if I give one group of people X, who do not have access to Y, and Y is accessible to all other people, but all other people are not privileged to X, and X is considered just as good of option as Y, then X is considered an adequate alternative to Y for the group of people who cannot access Y. However, we do not live in the 60's; the Jim Crow laws have been repealed, and the belief of "Separate but Equal" should have been put behind us. Never the less, this belief still holds strong as acceptable when regarding the disability community.

Instead of having the ability to park in adequate accessible parking and paying to park -- just like all other people utilizing downtown parking -- people with disabilities have been granted the ability to just park for free. I do not feel privileged; I feel patronized. I interpret my so called privilege of parking for free an attempt to keep me quiet - that I should not point out the inadequate parking downtown. And, in attempts to make me feel special, I instead feel like a second class citizen. I rather pay -- just like everyone else -- and have adequate accessible parking. I have paid, and will continue to pay, every time I park downtown (when there is a meter). I am a person, utilizing a spot, the law says to pay, so I am going to pay. I should not be exempt just because it is considered a solution to the problem.

Many people who are not disabled see this as a problem as well, but in that they should not have to pay either. This perpetuates resentment towards the disabled. Other people do not typically see both sides, so they do not understand that the accessible parking is not adequate, and the free parking for those with disabilities is not special treatment, but a copout. None the less, I do agree that if disabled people do not have to pay for parking, neither should anyone else.

The solution is simple; parking should be adequately accessible. This would be a win-win for all citizens and the city. Everyone could park downtown (and therefore pay), and the city would pull in a greater amount of revenue. For a town that claims to be so progressive, they certainly do a poor job of practicing true equality.

The Bathroom Beat: WWU's Humanities Bathrooms

The main bathrooms in the Humanities Building (HU) on Western Washington University's (WWU's) campus are not accessible to anyone who is unable to access stairs; these bathrooms are located in the basement, and the elevator cannot access the basement (just floors one, two and three). However, this is not in violation of the Americans with Disabilities Act (ADA) as an accessible bathroom is located on the second floor.; according to the ADA, as long as there is one accessible bathroom (or stall) provided in the same building where a bathroom is -- or even multiple bathrooms are -- available to the public, then the building is compliant with respect to that standard.

Flight of stairs that leads down to the bathrooms in the Humanities Building.

Even though HU fulfills the ADA requirement of having an accessible bathroom, the bathroom in the basement is in violation of the ADA. This is not due to this bathroom being located down a flight of stairs, nor is it due to none of the stalls fulfilling any other requirements; it is, however, in violation of the ADA due to there not being any indication of where the nearest accessible bathroom is located. At the top of the stairs leading to the basement bathrooms, there is a sign informing people that there are bathrooms located at the bottom of the stairway; however, this leaves anyone who cannot access stairs to have to search for a different bathroom. Not only does this sign not indicate the location of the nearest accessible bathroom, it also does not provide the information in Braille and the characters are not raised. There are signs labeling the bathrooms at the entrance to each restroom, but they do not provide the necessary information either -- which would be ironic if they did as most people who need an accessible bathroom would not descend a flight of stairs to use the bathroom -- and the information that is provided in not up to code as well.

A yellow sign indicating where the bathroom are located hangs at the top of the stairs.

An up-close picture of the sign indicating the location of the bathrooms in the Humanities Building. It is an 8.5" x 11" yellow sign that reads, "RESTROOM DOWNSTAIRS," in black, capital letters, with a large, black, downward-pointing arrow underneath the words. 

When a bathroom is not accessible, the ADA requires that there is an indicator of where the nearest accessible bathroom is located. WWU thought to put a sign at the top of the stairway as a courtesy to students, but this sign is only a courtesy to students who can access the stairs. WWU prides itself on being inclusive and welcoming, but simple acts of courtesy -- or lack thereof -- speak loudly when it comes to the true character of a person or entity. A sign is small, it is simple, but when such a thing is lacking, so is the inclusive nature and welcoming atmosphere. 

The Bathroom Beat: WWU's ENVS Bathrooms

A bathroom: a place that can bring me excitement -- like that of a four year old on Christmas morning -- or disappointment -- like that of the same four year old when they find their stocking stuffed full of socks. Bathrooms are not always accessible, making it either extremely difficult or impossible for me to use. This leaves me in pursuit of having to venture on to find an accessible bathroom, or just plan my day around having to return home to use my own bathroom. When I find an accessible bathroom that is truly wheelchair friendly, I am filled with excitement; I am not kidding, I love it when bathrooms are accessible! I also will plan my route in accordance with any accessible bathroom. The accessible bathroom on the ground floor of the Environmental Studies (ENVS) building on Western Washington University's campus is one of these bathrooms.

In ENVS, this one accessible stall is the only accessible stall for all six floors; even though there are bathrooms provided to the public on each floor in ENVS, there is not one accessible stall on each floor, but just one on the ground floor. The American with Disabilities Act (ADA) only requires one -- not one per bathroom, but just one per building -- so why provide more (even if that requires those who need an accessible stall to travel six stories in order to use the bathroom)?

This one bathroom stall is one of my favorites on Western's campus. It is rarely used, one of the largest ones (101.5"x74"), the stall door swings in (which makes it easier for people in wheelchairs to close), the lock does not require twisting or pinching, and the bathroom door has an access button; however, even this amazing bathroom stall is in violation of a handful of standards set by the ADA (i.e. there is not a pull handle on either side of the stall door, the sink drain pipes are not covered, the handle on the paper towel dispenser is too high, the coat hook is also too high, and there is a heater vent -- an obstructive object --  that is in between the toilet and the wall). Even though this bathroom stall is the only accessible stall in ENVS, it is not the only ENVS bathroom that is in violation of the ADA.

In ENVS, there are whole and half floors. The half floors are located on the west end of the building and can be accessed from the whole floors by half flights of stairs or via the west elevator. The whole floors are indicated by a whole number, while the half floors are indicated with a decimal (i.e. 0.3). The whole floors include the Ground floor (G), the first floor (1), the second floor (2), the third floor (3), the fourth floor (4), and the fifth floor (5). The half floors start with 0.3, and continue up to include floors 0.4, 0.5, and 0.6. Each of the whole and half floors (except 0.6) provide a bathroom to the public; all the bathrooms above G are not accessible; however, half of them are more than just unaccessible, they do not indicate the location of the nearest accessible bathroom; some are also lacking contrasted characters and Braille, which is a violation of the ADA.

The ADA requires a sign -- which should hang on the wall to the latch side of the door -- that indicates the sex of the bathroom in contrasted and raised characters as well as in Braille. The ADA also requires that if the bathroom is not accessible that the sign indicates where the nearest accessible bathroom is located. On 0.3, there is not a sign at all; this means it is in violation of the ADA.

On 0.4, there is a men's bathroom; there is also a men's bathroom on 4 (unlike the other floors where the half floor has a bathroom for one sex and on the whole floor one is provided for the other). So, there is a paper sign indicating where the nearest woman's bathroom is located (one floor up or one floor down); however, this paper sign does not have raised characters, information written in Braille, nor does it indicate where the nearest accessible women's bathroom is located. There is a men's sign, that does follow the ADA standards, but it is only pertinent for men who need to use the bathroom. It is possible that a woman in need of an accessible bathroom travels to the bathroom located on 0.4, sees that the nearest women's bathroom is one floor down, travels there just to find that the bathroom is not accessible and on top of that does not have a sign to indicate the location of an accessible bathroom; therefore, this woman has yet to relieve herself, and has spent time unsuccessfully searching for a bathroom.

A close-up of both the Men's and Women's bathroom signs on floor 0.4 of the Environmental Studies building. Both signs are to the right of the door. The Men's sign is dark blue, with a white symbol of a male is located in the top middle of the sign. Right underneath the symbol of the male, the word "MEN" is printed in white, capital letters. Below the word "MEN", the sentence of, "Accessible restrooms on ground floor", is written out in white lettering. Under this sign, a 8.5"x11", white, paper sign hangs. At the top of this sign it reads, "Where?", in black lettering. Under the "Where", there is a black rectangle centered in the middle of the white paper. In the top, middle of the black rectangle there is a white symbol of a female. Right underneath the symbol of the female, the word "WOMEN" is printed in white, capital letters. Below the word "WOMEN", the sentence of, "One floor up or down", is written out in black lettering. 

On 0.5, the sign is hung on the door, not on the wall. This is a violation of the ADA, and is a simple standard that WWU cannot even follow. It is important that the signs are in similar places so they are quick and easy to find; it is also important for the sign to be on the wall -- rather than the door -- in case the door is open. If the sign is not in the expected place, it may be difficult for a person who is legally blind or blind to find the bathroom in time.

The bathrooms on floors 1 through 5 all have signs that fulfill the set standards of the ADA. However, floors 1 and 5 have unisex bathrooms, unisex bathrooms that are large enough to be equipped with the necessary standards to meet the requirements of the ADA and become accessible. The ADA does not say that buildings cannot have more than one accessible bathroom or stall, but just indicates that as the minimum.

I am thankful that Western has provided an accessible stall in ENVS that both my PCA and I can easily fit in; however, getting to that bathroom can be an adventure. When having a class on the fourth floor,  I had to take the elevator down five stories to get to the bathroom; the west elevator can take up to five minutes to arrive at any given floor. When needing to use the bathroom, no one wants to travel five or six floors to use the bathroom, nor does anyone desire to wait for an elevator for five minutes before traveling those five or six floors. One day, I waited for the elevator in ENVS for a couple minutes before someone walked by and informed me that the elevator was broken. I then had to travel across the building to the east elevator and wait for it to arrive, ride down the five floors just to have to travel back to the west side of the building in order to use the bathroom. Why was there not a sign indicating that the elevator was broken and to instead use the east elevator; is it too much to ask for people to be courteous enough to value others' time?

Having to use the bathroom is something that is apart of daily life; most people do not think about this daily activity and take it for granted. Many people with disabilities plan their day around the bathroom; knowing if and where there is an accessible bathroom can be crucial information. The accessibility of a bathroom can be a factor in whether or not a person feels welcome; having an accessible bathroom can say a lot to a person with a disability. Having a public bathroom without having an accessible bathroom is not legal, and having a bathroom with the international access symbol that is actually not accessible is misleading and not acceptable. Please remember that people with disabilities are people; people need to use the bathroom, therefore people with disabilities need to use the bathroom too.