4/14/2013
As a wheelchair-user who travels with a personal wheelchair and transfers to a seat, I am utterly mind boggled at the difference in pricing for what Amtrak calls an accessible transfer seat and a regular coach seat. I travel by Amtrak from Washington Union Station to New York or Philadelphia 30th Street Station about every other month. While planning for my most recent trip to Baltimore, I was happy to see that persons with disabilities could now book online with convenience as other patrons versus calling an Amtrak representative. However, when I compared the online pricing of an accessible seat (with the 15% discount- $30 RT) and a regular seat ($22 RT) I just couldn’t comprehend why the ticket was so much more in price and called a representative. While the representative tried to explain the price difference being based on availability, it makes no sense and is very much so in violation of the Americans with Disabilities Act of 1990 (ADA). The purpose of the ADA is to protect persons with disabilities from discrimination and ensures equal opportunity and access for persons with disabilities. As far as I know, and I travel a lot via bus and especially by airplane, these seats are not priced in that way because it is illegal to price â accessible transfer seats and a wheelchair spaces higher than regular seats, because there are less accessible seats (and wheelchair spaces) on an Amtrak train. Does a passenger without a disability pay that price if they sit there? Are those seats reserved so that only folks with disabilities can sit there since they apparently are the first class price range on the train? In terms of air travel, first class seats are often priced more, understandably, you are paying for space, quiet, food/drinks and perhaps other amenities. But what is a wheelchair user getting by having to pay more for an accessible transfer seat because there are a lesser number of seats with an open area to transfer into on each train? I often see families with children and strollers and car seats in that space as well- do they pay the higher fare for what is considered an accessible transfer seat and wheelchair space in order to sit there? Another issue with the representative’s justification for the higher fare was that my wheelchair could not fit in the overhead racks. However, a wheelchair is a part of a person with a disability’s body and is never to be considered luggage or an extraneous article; when traveling by cab it is illegal for a cab driver to charge you a luggage surcharge because your wheelchair has to be placed in the truck; when traveling by plane both my wheelchair and walker are not counted as luggage and the two bags that I travel with are my only pieces of luggage that are checked and tagged as such. I have also seen passengers oversized luggage in the wheelchair spaces as well- are these passengers paying a higher fare to occupy this space with their luggage? The way Amtrak is justifying this difference in price of tickets for a person with disabilities is outrageous and I have asked my lawyer and other ADA advocates to look into this. I do plan to file a complaint with the Federal Transit Administration Office of Civil Rights which is responsible for civil rights compliance and monitoring to ensure nondiscriminatory provision of transit services. I look forward to being in contact with a manager or someone higher up representing Amtrak in this regard. With great concern, Chanelle Houston

5/13/2013
Dear Ms. Houston:

Thank you for your email.

Please be assured that Amtrak is absolutely committed both to the letter and spirit of the Americans with Disabilities Act. We are so sorry that you received misinformation from one of our reservation agents regarding fares. In spite of our best efforts, there are always those times when communication breaks down and misunderstandings result. Our reservations agents are supposed to search for the lowest fare available before automatically applying the disability discount, and if another fare is lower, they should offer that fare. Please accept our sincere apologies for your inconvenience.

We would also like to advise you that Amtrak is working on programming the booking path for our passengers with disabilities so that the 15% disability discount is automatically applied to the lowest available fare; however, this has not been completed. Until this is done, text has been added to the passengers with disabilities booking path notifying passengers that lower fares may be available through call centers. When you see a lower promotional fare is available and you also want to reserve a wheelchair space, please call an agent and explain that you want the lowest promotional fare, as well as a wheelchair space until this programming is completed on the website. Our reservation agents can be reached at 1-800-USA-RAIL and are available 24 hours per day, seven days a week.

As a token of our regrets for your disappointment, we are holding on file for you a Transportation Certificate in the amount of $25.00.  We hope you will use it toward your next Amtrak ticket purchase.

Once again, thank you for writing. We look forward to the privilege of serving you again in the future.

Sincerely,
Customer Relations Specialist
Office of Customer Relations
Washington, DC

Most recently in traveling for work and leisure I had the opportunity to utilize paratransit in Atlanta, Philly, and Baltimore. A few differences include:

• All cities had a flat rate fare (ATL and PHL- $4.00 per trip; Baltimore- $1.85) whereas Metro Access here in DC has zones and time of travel which dictates the fare and there is a maximum fare of $7.00.
• The vehicles in ATL and Baltimore were much larger and could fit about seven passengers whereas the MA vehicles can fit up to five.
• All vehicles had a fare box which made paying easier as you are able to put your fare in the box as you board and you can even use the same electronic card used for bus and rail. It’s cash only on MA vehicles here in DC.

The most glaring difference was the fare so good thing I am on a task force within Metro’s Accessibility Advisory Committee which will meet and discuss this very issue!

On an aside, while I was in Atlanta, I hopped on over to New Orleans to meet my aunt from San Fran and for the first time since my injury I snapped…had a complete meltdown. It went like this:

I am getting off the plane and since I have to wait for my wheelchair to be brought up from the belly of the plane, I and another woman in a wheelchair were last off the plane. While heading to baggage claim, the gentleman pushing the other woman says to me “I hope you don’t mind and I hope this isn’t rude but what happened that you’re in a chair? Now to give a precursor here, it was 11 o’clock at night, I hadn’t eaten dinner and didn’t have the best airport experience prior to my flight so needless to say I was not prepared to be my pleasant self and give a gentle response. Instead I almost yelled, (more of stern voice) “well I DO mind because it IS RUDE…and I was hit and run over by a car! His response- “Wow! That person needs to get their butt whooped.” With that, I had nothing more to say and sped off to retrieve my bags. He did find me at bag claim and was very apologetic for his nosiness and disrespect. Despite that, had an AWESOME time in NOLA with my aunt and will be returning for my 30th birthday in September! 

The Transportation Security Administration (TSA) Cares website (http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions ) has the most information on traveling with a disability and I actually was not aware of this website when I first started to travel again. I essentially visited the website of the airline for similar information. TSA Cares is a helpline to assist travelers with disabilities and medical conditions. It is recommended that passengers call 72 hours ahead of travel for information about what to expect during screening. This is crucial because everyone’s situations are different. Also, the list of disabilities goes beyond physically, visually, or hearing impaired, but also includes the elderly and those with development disabilities like autism.

A few points the presenter highlighted:

• While you may have documentation stating details of your condition, there are no papers that will exempt you from the screening process prior to boarding a plane.
• Documentation or a notification card is a good idea to have if you have a condition you want to keep discreet, ie, colostomy, insulin pump.
• If you travel with items that are medically necessary, your bag can be over the weight limit. (Not too much overweight- a pound or two.)
• For those traveling with their own wheelchair, a pat down will be done while you are sitting in your chair. Prosthetics, hearing aids, shoes, or service animals do not need to be removed; however, if possible these items may be screened (eg, officer may help take your shoes off to screen).

Lastly, if ever traveling and you feel you are not being treated correctly, ask for a passenger support specialist- they are are supposed to be present at every screening checkpoint.

Another great website shared was Able to Travel which is an excellent resource for finding accessible travel by bus, boat or plane! I’ve found an accessible African safari on this website! Sweeeet! http://www.abletotravel.org/

The day went like this: pushrim, handcycle, lunch, competition day prep talk, strength and agility, swimming. Pictured below is the pushrim chair, used for the running portion of a tri, and the handcycle, used for the cycling portion. I’ve used the handcycle before for other walks but the pushrim was a completely new experience. It was so awesome to have the coaches there to teach me how to use the equipment and they are para-athletes themselves! Even cooler, both coaches on the pushrim and handcycle I met last summer when I swam apart of sprint tri relay team. There’s acually a picture of all of us lined up getting ready to get in the water at the starting line.

So the way the pushrim works—essentially it’s a completely different form of “propulsion” compared to a wheelchair. Instead of pushing with your hands open and gripping the wheel of a wheelchair, on the pushrim, you wear a glove that keeps your hands in a fist position and you are moving by pushing off of the rim with your fist at the one o’clock point of the rim and releasing at the 6 o’clock point. It was awesome and I want my own!

Funny moment of the day– one of the little boys completely rear ended me while in the handcycle. (If you look through the photos via the below link, photo number 447 is of me stopped for a minute and the next one, 448, is just before he rear ended me! Lol) And what’s so funny is that he didn’t even react. I kind of yelped and felt like I had a little whip lash and he just went around me and kept going. The coaches said it was his first time on a handcycle and he didn’t know how to brake so beware.

The game day talk was from a US Triathlon Coach from Florida and was both motivational and informative. One thing I took away was that all of us in that room have gone through a lot mentally, physically and emotionally so the pain and grit we will endure while training for and competing in a tri we are prepared for! Peaceful warriors is what he called us!

Finally, at the end of the day, the session I was most looking forward to was SWIMMING! The coolest thing was that the mid-atlantic paralympic swim coach was there and watched me swim, inquiring about  my goals, injury, and past and current swimming exposure. After showing off all four of my strokes and then doing some timed work, we discussed heading out to a meet in Ohio, come May to get some official times and claissfy me.

So it was an awesomely, long day and the next two days I was the sorest I have EVER been! There was a photograher present who took awesome pictures! Check them out here (Pages 10, 11, 13, 17, 19 are of me!)) http://gschlossnagle.smugmug.com/Sports/Mid-Atlantic-Paratri-2013/

Here is the link to all- http://www.youtube.com/healthytomorrow

After the meet and according to tradition, my girls and I planned to do some shopping. Well this is where the interesting interactions begin.

The saleswoman in the Michael Kors store– as soon as my friends and I walk through the door, from the middle of the store we don’t hear “welcome to Michael Kors, hello,” but “what happened?” My girls just about hit the floor and I looked at them and said let’s go.

Just before heading down to the train platform– a guy also waiting at the red cap stand just looks at me and makes a comment, “something happen to your legs?” I have a habit of being snarky, short and cold so I say “yup!” Of course he inquired further with “well what exactly happened?”

Thanks to some of my closest friends they remind me that we cannot control the actions of others and that people are not going to stop being curious. I am learning to not take the curiosity of strangers and their intrusive questions as a personal attack, but rather a chance to educate on proper etiquette, person to person skills and common respect since they seemed to not get that lesson early as a child, or any sort of sensitivity training.

One refreshing interaction which brought me into my peer mentoring role occurred while waiting at the train station– a fellow wheelchair-user strolled by me sitting at a table on my computer then circled back around and asked if he could join me at my table and eat his lunch. Essentially he was so impressed I was 1) a woman in a wheelchair and 2) travelling on my own. We had a nice conversation about traveling independently, traveling to Puerto Rico to pick fresh mangoes, and spicy food!

What I enjoyed most about this reality show is that instead of being another show following celebrities, it followed real people living with true challenges. Push Girls portrayed, very well, how five women, Tiphany, Auti, Angela, and Mia (and mid-season, Chelsea), aspired to live life just as they did prior to their injuries, but in an adapted way. Although these ladies were often labeled as disabled, I love seeing them defy that label by essentially doing everything in a seated position which I call uniquely-abled. I often tell people, I am NOT disabled. I, and as these women showed, can do everything abled-bodied people do- drive, swim, lift weights, yoga, cook, vacuum, take out the trash, grocery shop, ski, travel by plane, go to the salon, beach or concert, etc…get my drift?

Towards the end of the season it was great to see Chelsea introduced to the ladies, as she was newly injured. The four ladies really served as a mentor to Chelsea as they are more “seasoned” but it would have been great to see more of the struggle a newly injured person faces; including rehabilitation and learning to do activities of daily living again but from a seated position (bathing, dressing, etc.).

Also, love the title- Push Girls- as it’s figurative and literal as these women push through life and the day-to-day challenges faced relying on a wheelchair for mobility. Each week fears and misconceptions of a person in a wheelchair were shown, including Angela’s quest to get back in the modeling world, Auti’s struggle to prioritize family and career, Tiphany’s motivation to stay fit, and Mia’s challenges to not only get back in the pool but also embrace her mother and her own ignorance. However, there are two huge pieces that come along with being in a wheelchair that seemed to be lacking in season one and I really hope season two will incorporate: more/daily interactions with able-bodied people and advocacy for accessibility.

I’ve been injured for three years now and I still, almost daily, get stupid, ignorant, intrusive questions from complete strangers who are able-bodies. This varies from what happened to you; how did you hurt your legs; will you ever walk again; to are you a wounded warrior? Now, I am sure that these women also get that so I was surprised that these encounters weren’t highlighted throughout the show. The other topic that seemed to be omitted is ADA policy and advocacy for accessibility. Again, I know I am not the only one writing, calling and challenging, with much frequency it seems, about the lack of accessibility in many public restaurants, restrooms, buildings, hotels, and transportation.

With that being said I am really looking forward to season 2 to begin sometime this year!

January 23, 2013 – Doctors at The Miami Project to Cure Paralysis, a Center of Excellence at the University of Miami Miller School of Medicine, performed the first-ever Food and Drug Administration approved Schwann cell transplantation in a patient with a new spinal cord injury. The procedure, performed at the University of Miami/Jackson Memorial Medical Center, is a Phase 1 clinical trial designed to evaluate the safety and feasibility of transplanting the patient’s own Schwann cells.

“This historic clinical trial represents a giant step forward in a field of medicine where each tangible step has tremendous value. This trial, and these first patients in this trial specifically, are extremely important to our mission of curing paralysis,” said neurosurgeon Barth Green, M.D., Co-Founder and Chairman of The Miami Project, and Professor and Chair of Neurological Surgery. “The Miami Project team includes hundreds of scientists, clinicians, and technicians who have joined hands to make the ‘impossible possible,’ for which this trial is a key goal and dream now being realized. This achievement reaffirms that the tens of millions of dollars and the incalculable work hours were well invested in this first of a kind human Schwann cell project.”

Led by W. Dalton Dietrich, Ph.D., Scientific Director of The Miami Project and Professor of Neurological Surgery, Neurology and Cell Biology & Anatomy, the Schwann cell clinical trial team at The Miami Project is composed of a multi-disciplinary group of basic science and clinical faculty members, scientific staff, and regulatory personnel focused on advancing the trial. The transplantation procedure was conducted by the Principal Investigators of the trial, Drs. Allan Levi, M.D., Ph.D., Professor of Neurological Surgery, Orthopedics, and Rehabilitation, and James Guest, M.D., Ph.D., Associate Professor of Neurological Surgery. The patient had a neurologically complete thoracic spinal injury and received the transplantation of autologous Schwann cells about four weeks post-injury. There have been no adverse events and the team is moving forward with the trial.

“As a basic scientist, the hope is always to increase knowledge and discovery,” said Dietrich. “Not every day are you able to see that translated into the clinical realm with the hopes of bettering the lives of those suffering, so this Phase I clinical trial is a vital step for the field of SCI research, and for The Miami Project team that has been working diligently on this therapeutic concept for more than a quarter of a century. This trial, when completed successfully, will lay the critical foundation for future cell-based therapies to target spinal cord injuries.”

The Miami Project clinical trial will enroll a total of eight participants with acute thoracic SCI. Newly injured patients brought to the trauma center would have to meet the stringent inclusion criteria. The participants will undergo a biopsy of a sensory nerve in one leg to obtain the tissue from which to grow their own Schwann cells. The Schwann cells are then grown in a state-of-the art culturing facility for three to five weeks to generate the number of cells necessary for transplantation, and to undergo the strict purification process. By the time the Schwann cells are surgically transplanted into the injury site, participants will be 26-42 days post-injury.

All procedures will be conducted at UM/Jackson and The Miami Project to Cure Paralysis, with colleagues at the University of Miami Miller School of Medicine. Each participant will be followed intensively for one year after receiving the transplantation surgery, and their neurologic status, medical status, pain symptoms, and muscle spasticity will be evaluated. It is expected that it could be two to three years from the time the first subject is enrolled until the final subject is one year post-transplantation. All participants will continue to be monitored for an additional four years under a separate clinical protocol. This Phase I trial is the foundation upon which The Miami Project will develop future cell transplant trials targeting different types of injuries, times post-injury, and therapeutic combinations.

http://www.themiamiproject.org/page.aspx?pid=1076

As an able body, you may not think about the health benefits of standing but they are numerous including:

• Improve/maintain bone integrity/skeletal development
• Lessen/manage the progression of scoliosis
• Strengthen cardiovascular system and build endurance
• Improve bowel function and regularity
• Aid in kidney and bladder functions
• Improve/maintain range of motion
• Management of atrophy in the trunk and lower extremities
• Manage pressure (ulcers) through changing positions
• Improve strength to trunk and lower extremities
• Decrease muscle spasms
• Decrease joint/muscle contractures

Even though I have mobility in my lower extremities and I am walking at home with a walker, the more I stand the stronger I get; if you don’t use it, you lose it is the saying so I am so thankful to be able to be on my feet as much as possible.

I love this poster on Easy Stand’s website which visualizes the benefits of standing- http://www.easystand.com/health-benefits/

1. Personal- this year I will compile all of the blog posts, written notes and pictures and draft my book titled, Beyond the Chair!

2. Career- explore different opprotunities within my company to keep learning and be challenged!

3. Physical- my physical therapist and I have made a pact to train for sprint triathalon or 5K!