Ryan Grenoble Reporter, The Huffington Post
Lately, during the many nights Marieke Vervoort spends awake and in pain, two things have been crossing her mind: gold medals and death.
In a perfect world, she might have both soon.
The 37-year-old Belgian Paralympic champion has an incurable degenerative spinal disease, one that causes unimaginable pain. Pain so great she’s considering euthanasia after the Rio Games, which will be her final competition.
During the 2012 Games in London, Vervoort won gold in the 100m wheelchair sprint and silver in the 200m.
“Everybody sees me laugh with my gold medal, but no one sees the dark side,” Vervoort told the French newspaper Le Parisien, in comments translated to English by The Advertiser.
“I suffer greatly, sometimes sleeping only 10 minutes a night ― and still go for the gold,” she said. “Rio is my last wish. I train very hard even if I have to fight day and night against my illness. I hope to finish my career on a podium in Rio.”
In 2002 ― two years after Vervoort contracted the rare disease and ended up paralyzed ― Belgium implemented what’s been termed “the world’s most liberal law” for physician-assisted suicide. In 2014, the country extended the right to terminally ill children of any age.
“After Rio, I will stop my sports career, I want to see what life brings me and I will try to enjoy the finest moments,” Vervoort told the Daily Express.
“I have a bucket list, including stunt flying, and I have started thinking about euthanasia.”
Vervoort isn’t certain yet if that’s her path, but she does seem to have a pretty specific image of what it might look like.
“My funeral, it’s not going to be in a church. It’s not going to be with some coffee and some cake,” she told France 2, as translated to English by The Independent. “But I want everybody to have a glass of champagne and to say, ‘Cheers, Marieke. All the best. You had a good life. Now you are in a better place.”
Per Bleacher Report, Vervoort’s first race of the 2016 Games will be Friday in the 400m.
While disability has been gaining attention throughout the course of this election cycle, I believe more can be done to focus on key issues that affect the disability community. As such, my goal in creating this video was to hold creators of all political ads and all who are involved in campaigns accountable to include disability rights in a meaningful way in their messaging. We need to be talking about substantial topics that affect all people with disabilities, especially people whose disability identity intersects with other minority identities – issues including employment, affordable and accessible housing, Social Security, mental health care, the incarceration of people with disabilities, subminimum wage… as you can tell, there are so many crucial issues
There is so much at stake for people with disabilities this election, and so while this video is meant to hold people accountable, it is also intended to propel conversations and encourage both candidates and voters with and without disabilities to recognize the importance of disability issues. It’s time to ask the questions and have the conversations about disability that really matter
Emily Ladau | Rooted in Rights Storyteller
For more info on Rooted in Rights, click HERE
New Mobility Article: Frustrated About Trying to Get Your Broken Wheelchair Fixed? You Are Not Alone.
By Jennifer Wolff| May 19th, 2016
It is frustrating having to deal with a broken wheelchair — and much of that frustration comes from trying to find someone to fix it both quickly and correctly.
That frustration boiled over last week when an article by Gina Schuh, “Voices of the Community: My Wheelchair is My Legs, When it Breaks it IS an Emergency!” went viral. In less than a week, her detailed look at the year-plus wait she has endured to get a new wheelchair has racked up thousands of shares and likes across social media with its frank take on the all-too-familiar hassle many wheelchair users face.
Here is a very short excerpt:
“Most people think about the mobility side of having a broken wheelchair, but it comes with an emotional side. When you can’t get out of your house because of your wheelchair, you feel as though you live on a deserted island, isolated and alone. It’s terrible that people are forced to wait months for replacement parts and repairs. THERE IS NOTHING on my end that I am doing to delay time. Money? I’ve got it. Prescription and doctor’s letter of necessity? I’ve got it. Insurance? I’ve got it. I would be willing to drive to another state to get my wheelchair! Still, it is out of my control, and I am forced to deal with these monopolies who use insurance to manipulate the system.”
And now with a recent update from Medicare that will require a doctor visit and order BEFORE a wheelchair repair can be completed, things may only get worse. United Spinal Association’s Advocacy Alliance is working to change this new Medicare policy to ensure users can get the right wheelchair and repairs when you need them. But we need your help.
To address this, United Spinal Association’s Advocacy Alliance created this short survey so you can share your experience with wheelchair repair. You can take that survey here.
Your experiences will also be used to convince Congress to support and vote for the Ensuring Access to Quality Complex Rehabilitation Technology Act of 2015. We believe this legislation will decrease some of the hoops we have to go through to get quality and timely repairs completed, since it requires that the company providing the DME to also provide repairs. Right now if a place sells DME, they’re not required to know how to fix it. Also, right now anybody can try to do a repair and sometimes the repairs aren’t done correctly.
You can find the description of the Complex Rehab Technology legislation HERE and here is a link to connect you with your Elected Officials.
Your story is essential to creating change. Join the ADVOCACY ALLIANCE or e-mail me at firstname.lastname@example.org.
“You don’t have to stand up to STAND OUT!”
Sarah Blahovec Advocate for individuals with disabilities
To be honest, I was really hoping that what I’m about to write was common knowledge by now. I really wish that society in general understood disability better, but in light of a number of concerning articles recently, from a USA Today article about people “faking” disability during travel, to a New York Times Magazine article about parents stunting the growth of disabled children through estrogen treatments, it seems necessary to counter the basic inaccurate beliefs people have about disability and those who live with it. Below are a few of the most popular myths, along with suggested reading on each topic.
Myth: If you’re in a wheelchair, you can’t walk
This week, a USA Today article called out “fakers” who allegedly make up a disability to get special privileges when traveling. In this article, examples include people who are able to stand in a buffet line or in the airport, but are later seen in wheelchairs during priority boarding. The author seemed incredulous that somebody who used a wheelchair could also stand, and accused those who are able to stand of faking a disability.
Truth: You do not have to be paralyzed to need a wheelchair
There are millions of individuals with invisible disabilities in the United States. These disabilities are not immediately apparent, but the pain and other symptoms that come along with them can be extremely debilitating. Take, for example, Multiple Sclerosis. MS is a disease in which the immune system attacks the myelin that covers nerves, damaging the central nervous system. Symptoms include fatigue and mobility issues, and vary from day-to-day and severity. About 400,000 people in the United States and 2.5 million people worldwide have MS. Keep in mind that this is just one invisible disability that can cause someone to need a wheelchair without being paralyzed. There are many other disabilities and diagnoses that can cause chronic pain, fatigue, mobility problems, and other symptoms that necessitate a wheelchair.
Sometimes, we take accessible buildings for granted; but they aren’t always accessible for people living with disabilities and our rights aren’t always granted.
Every now and then we have to make some noise, show up and be counted, prepare for a smack down…
So it was at the California Building Standards Commission last week. Couldn’t make it to Sacramento? Didn’t really understand the issues? Wondering what happened?
We’ve condensed two days of testimony and cliff hanger votes into 30 jam-packed minutes with 12 of the advocates who made the trip and stood up for your access rights. They are Ana Acton, Barry Atwood, Vanessa Proe, Nicole Sykes, Connie Arnold, Tim Thimesch, Dawn Anderson, HolLynn D’Lil, Russell Rollings, Kristen Ansel, and Dolores Tejada.
Produced and Edited by Sheela Gunn-Cushman with production help from Adrienne Lauby and Shelley Berman.
For more details and to follow this issue:
Jan 19: https://www.youtube.com/watch?v=-qvsIfkWdvo
Jan. 20: https://www.youtube.com/watch?v=U6Z26-9QJxw
Disability Organizing Network https://disabilityorganizing.net
HolLynn D’Lil: email@example.com
On July 26, 2010, the twentieth anniversary of the signing of the historic Americans with Disabilities Act, an Advance Notice of Proposed Rulemaking addressing the obligation of public accommodations to provide websites that are accessible to individuals with disabilities was issued by the United States Department of Justice. At the time, President Obama correctly observed that these proposed rules would be “the most important updates to the ADA since its original enactment.” Yet the release date of the actual rule proposal for revising the Title III regulations of the ADA, originally scheduled for January of 2012, has been extended until sometime in 2018, eight years beyond the issuance of the original ANPRM and at least a year after the end of his administration. Having originally taken a strong stance on the importance of these regulations, it now seems like the Obama administration is wishing to wash its hands of them entirely.
As people with disabilities and organizations representing people with disabilities, we know first-hand that equal access to the internet is paramount for education, to obtain and retain employment, and for everyday tasks such as paying bills, online shopping, booking travel, etc. We will not sit idly by as the administration attempts to sideline this critical access issue, so the National Federation of the Blind has launched a petition demanding, in the strongest terms possible, that the administration issue these regulations immediately.
Upon reaching 100,000 signatures, the Obama administration is required to respond, so in addition to sharing our we the people petition via Email and your social media outlets, please personally ask 10 family members, friends, and colleagues to sign it and share it as well. A little personal contact goes a long way! 100,000 signatures is a lofty goal, but with the support of our partners in the disability community, we know we will reach that number.
We know that given the necessary tools and training, people with disabilities can reach our full potential. Join us in demanding the Obama administration release these critical regulations immediately.
Government Affairs Specialist
National Federation of the Blind
200 East Wells Street
At Jernigan Place
Baltimore, MD 21230
P: 410-659-9314 Ext. 2206
Daily Journal Guest Perspective
OP-ED: Making transportation affordable to all
November 25, 2015, 05:00 AM By Vincent Merola
With increased operational costs and structural deficits to address, SamTrans’ Board of Directors voted unanimously last month to raise fares for its fixed route and paratransit bus rides.
These fare raises will have a significant long-lasting negative effect on people with disabilities, especially those who rely on and frequently use SamTrans services. The vast majority of these riders are on fixed incomes, making even slight increases painful to bear. Adult fares will increase by 25 cents to $2.25 in 2016 and another 25 cent increase will be added in 2019. Nobody really likes it when the costs of things go up. I fall under this category. Having recently moved to the Bay Area by way of Connecticut — a place with virtually zero public transportation — I have come to use SamTrans quite frequently. I enjoy hopping on the ECR in Redwood City to get to and from work. The public transit system in San Mateo County serves me well. I’m able, and therefore willing to pay the increased fares.
SamTrans Board of Directors also voted to raise fares for its RediWheels/RediCoast paratransit services. On its website, SamTrans states, “paratransit rides are for persons with disabilities who cannot independently use SamTrans bus service.” It goes on to state that under the Americans with Disability Act, transit agencies are required to provide paratransit service. The law requires transit agencies to provide paratransit service comparable to the level of fixed-route service and that they can charge no more than twice a fixed-route fare. Presently, the one-way fare for paratransit in the county is $3.75. The Board of Directors voted to increase that by 50 cents to $4.25 in 2016 and another 50 cents in 2019, bringing the total one-way fare to $4.75 by that time. Both of these increases will bring the fare just under the maximum allowable limit under the ADA.
There is something we can do to alleviate these pressures. After receiving public input, SamTrans (thankfully) decided to keep the paratransit Lifeline fare at its current rate of $1.75. If you are unfamiliar with this SamTrans program, that might be due to the fact that it’s not easy to find on its website. A search for the term “Lifeline” at samtrans.com produces five seemingly unrelated results. One would need the Paratransit Rider’s Guide to understand the program. Here, the guide states that only people on Supplemental Security Income, General Assistance or Medi-Cal may be eligible for the Lifeline reduced fare program. This criterion simply does not go far enough to help the disability community. It needs to be expanded to include other low income riders.
Social Security Disability Insurance and Social Security retirement have average monthly payments of $1,146 and $1,294, respectively. For a single-person household, that’s roughly 125 percent of the federal poverty level. Any rational person would consider those numbers to be low income, yet these recipients would not be eligible for the Lifeline service.
In a county with such a high cost of living, people on fixed incomes are often forced to make every penny count. At our center, we already hear from people on fixed incomes not able to afford the cost of transportation to senior centers or to visit friends and family. We even hear from people on fixed incomes forced to make the choice between purchasing food or medicine. When the cost of RediWheels/RediCoast rides goes up next year and then again in 2019, these consumers will have even more tough decisions to make. By then, a regular round trip paratransit fare will be a whopping $9.50.
The fixed route fare increase will not prohibit me from getting to work or from visiting friends for dinner and drinks. You see, I am not on a fixed income and I’m able to pay the added 25 cents. But for San Mateo County residents with disabilities on fixed incomes, a $9.50 ride to see family, visit a doctor or to pick up medication is an unaffordable luxury.
SamTrans needs to promote the Lifeline program better and it needs to expand the program’s eligibility to include more low-income riders.
Vincent Merola is the systems change coordinator at the Center for Independence of Individuals with Disabilities — an Independent Living Center located in San Mateo.
On an icy and frigid Chicago winter night at the indoor sports dome where I pick up my son and his friends from soccer practice, some lady was illegally parked in not one, but two handicap spots. This parking lot is always a nightmare, with parents dropping off and picking up kids simultaneously for practice. There’s always a bunch of children darting between cars sporting nothing but soccer shorts in subzero temperatures. Any civilized regulations regarding social conduct and parking lot etiquette do not apply at this sports dome. It’s every man, woman, and child for themselves.
Since I was temporarily paralyzed in 2006, I have been issued a permanent handicap placard for my car. I try hard to only use my placard when I genuinely need it. My doctor qualified me as disabled because:
Keeping you updated on all things CID and disability.
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