Thursday, August 18, 2016

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.

Wednesday, August 10, 2016

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



Wednesday, August 3, 2016

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.



Wednesday, July 27, 2016

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. 

Wednesday, July 20, 2016

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. 

Wednesday, July 13, 2016

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.


Wednesday, July 6, 2016

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 ability to walk. With the aid of my wheelchair, I can get from point A to point B, just like anyone else.

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 the 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 would 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 makes me disabled.