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.
Wednesday, June 22, 2016
Wednesday, June 15, 2016
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.
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.
Wednesday, June 8, 2016
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.
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.
Wednesday, May 25, 2016
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.
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.
Wednesday, May 4, 2016
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!
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.
Saturday, April 30, 2016
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.
Wednesday, April 27, 2016
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!
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!
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