>My day at the Shepherd Center

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For the last year, I have been using a wheelchair that looks and feels like the engineering work of Dr. Frankenstein. The power wheelchair I had for the last six years or more gave out over a year ago after repeated damage by various airlines in my travels (that’s a whole other blog), so my mother took an old hospital chair and mixed parts together until it was something useful. It was only supposed to be a temporary fix but with the slow pace of Medicaid, it has taken a long time to get anywhere with acquiring the equipment that I need. Today, however, I feel like a huge weight has been lifted from my shoulders. The shiny new wheelchair pictured in this blog will soon be mine with a lot of custom parts built to fit my body.

I have had a bizarre feeling the last week or so that something was wrong with my appointment at the Shepherd Center. It’s a place in Atlanta where people with severe disabilities and spinal cord injuries go for treatment and getting new wheelchairs and other equipment. A lot of military veterans are treated there for their combat wounds as well. It’s a wonderful place full of (mostly) helpful, smiling, positive staff. No facility is without faults, though. The scheduling department screwed up my appointment by switching my notification letter with another patient, so I showed up today for someone else’s appointment. The envelope was addressed to me but the name on the appointment sheet was someone else. When we realized what was going on, the receptionist went to her supervisor because I wasn’t even showing up in the system. Eventually the supervisor concluded that there was a huge mistake and that my wheelchair appointment was actually two days ago but nobody told me a thing. They knew they were at fault, so they sent me up to the wheelchair clinic anyway even though I didn’t technically have an appointment.

My specialist was amazing. He gave me enough attention and respect even though there was an appointment screw up and he treated me with the kind of dignity that I rarely get in the system. We went over my various needs, what type of pain I suffer, and what options might suit me the best. The Shepherd Center really advocates independence and mobility, so if there is any possibility for a patient to use a wheelchair of their own power, they do everything they can to make it happen. I have limited use of my right hand, so they decided that I should be in charge of my own mobility as long as I can.

We talked about the limitations of Medicaid and the rehab equipment industry a lot. I don’t have a wheelchair accessible van because I can’t afford it, which means 90% of power wheelchairs are not going to work for me because they weigh 200-300 pounds. Nobody can lift that or fold it up. The options for power wheelchairs that break apart and fold up into four-door sedans boil down to only a small handful of choices. The reason is Medicaid and the industry in general falsely believes that disabled people don’t go out and live normal lives. We are mistaken as people who are confined to the home and never have social lives or experiences out of the home besides our numerous doctor appointments. Therefore, technology and mobility equipment have never catered to the idea of accessibility outside of the house. The industry in general just doesn’t offer power wheelchairs designed for people with active lives like I do and so many of us do. Active, social quadriplegics are a myth, apparently.

I was hoping to find portable power wheelchairs advanced in technology since the last time I got one about six to eight years ago, but sadly, nothing has advanced in that field. In fact, Quickie (the brand I have used for years) completely discontinued their portable power wheelchairs. That means my old wheelchair is an extinct species. This time we went with the Invacare brand, which is a brand I have never used. The picture at the top of this blog is the model we ordered but we changed some things to fit my difficult body. We ordered footrests that are very close together and at a 90 degree angle, rather than the ones in the picture that stick out. There will be a butt cushion and a back cushion that will prevent me from getting pressure sores and ease the bones that cause me pain. I was measured, stretched, poked, prodded and examined for more than two hours before we made any real decisions. Invacare is really my only choice unless I went with a wheelchair that I can’t move myself. Losing what little independence I have would be very disheartening.

To take it apart, you pull out the batteries, pull out the butt cushion, the back cushion, take off the footrests and then pull up on the seat so the frame folds up. When it’s folded, it’s only thirteen inches wide. It sounds like a pain in the rear but that’s my life. It’s always been this way. Going out anywhere is a chore but I have to grin and bear it to go anywhere. Just get on with life and don’t look back or dwell on what you can’t do or what you don’t have! So many people at the Shepherd Center can’t feel their bodies, can’t breathe on their own, can’t pee without tubes, etc., and seeing their suffering up close reminded me of how lucky I am. I may be a quadriplegic for life but I can feel my body. I can breathe. I can move. Life is not as hard as we make it out to be every day. These patients still smile and still find joy in terrible situations. I wish everybody could visit these people with spinal cord injuries and other severe disabilities.

It will be a month or more before I get my new wheelchair. His name is Marcel, by the way. I always name my wheelchairs because they are such an extension of my body. They almost develop personalities and I would be lost without them. Marcel, my love, you will come home soon!

5 responses to “>My day at the Shepherd Center”

  1. Kerry Terrell, Associate Director says:

    >Amazing post! Thank you for putting this out there for the world to read. Can't wait to see Marcel.

  2. Rebecca says:

    >um Marcel? is your natasha gonna be riding in this wheelchair a lot? hahahaha!! Jessica, I am SO happy for you to be getting a new chair, and regaining some of the independence you deserve. If I win the lotto, you can have the van you need. *note to self* play the lotto….

  3. Jodie Stogner, PT, ATP says:

    >What wonderful writings of how the medical model
    approach to the wheelchair process is suppose
    to work!!!!!! YAY!!! maybe one day, the day of
    calling a TV ad and getting NO evaluation and NO choices
    of products will see it's end if end users like yourself
    continue ti advocate and speak out that there is
    another and better way!!! Thank you!!

  4. wheelchairs says:

    >I really appreciate your post and you explain each and every point very well.Thanks for sharing this information.And I’ll love to read your next post too.

  5. Camila says:

    Hi Francoise,Thanks for taking the time to read my conmtmes about LHR from your last blog and taking the time to write this article. Firstly, you talk about wanting to try the transfer yourself, I believe it would be best if disabled people actually got the chance themselves to show the problems at the airport and on planes because one thing I think this article lacks is the actual right photos to compliment the story. Disable people want more than pictures of doorways. How about a picture of the disabled toilet or mentioning the fact that there is not one if that is in fact true? But then doesn’t this defeat the purpose of having the wheelchair accessible electric entrance door. Or a picture of the wash basin straight-on to show nothing is in the way so you can glide straight in to wash your hands or a shower chair in a disabled accessible shower room (again if in fact there is one). Where are the pictures of bubble paths (yellow bubbles on the floor for blind people to follow) in the corridors? The fact that you have put a suitcase in one of the doors was a good idea though, but if a suitcase can fit with that much space around it then a normal wheelchair should be fine. To answer your question about (the narrow wheelchairs) isle chairs, it definitely would not solve the issue. You are forgetting one basic thing. Isle-chairs all have four small wheels on them making it impossible for a wheelchair user to be independent. Wheelchair travellers do travel and use facilities independently. There are hardly enough isle-chairs at the airport to transfer passengers onto planes let alone having them here. The things that would help are a roll on stair climber to pool level, a transferring lowering chair to the pool, accessible toilets (rails, low wash basins, mirrors at the right level) and a shower chair in the shower. Another question is where did you find all those wheelchairs lying around? Wouldn’t it be better if they were stored in one central area that was actually monitored, like a dedicated special needs lounge, but unlike LHR, a place where accessible information could be found on destinations, accessible level computers could be used, braille books could be read or borrowed by flyers, copies of airline menus could be picked up by blind flyers and better dispatching of isle-chairs could be operated from here also as well as training of staff in terms of lifting passengers from wheelchairs or sign language classes for stewards. Yuval, I actually have another 5 pages for you also I am about to send. I can send it to you also Francoise if you really want to have a further look into this issue or any of the other QHers for that matter. Maybe you could just go to one of the disabled toilets around the international terminal and lift your feet off the ground and try to reach the toilet paper roll on the wall, it is far away enough that you will probably end up on the floor from my experiences. In short for a more authentic view on the subject maybe the 8th QH should be someone with a disability. Unfortunately, one of the problems we disabled people face when trying to make change is the fact that those responsible say “but there aren’t enough of you to warrant spending the money” and by able bodied people covering such topics without a disabled person it helps to aid this theory. Maybe it is something like Yuval’s last blog about “losing the uniqueness” if so many able bodied people can cover the story. I would be more than happy to meet with you so you could see these problems in more of a reality. One story I would like to share is about when I first moved to Helsinki, I moved into a student house which I was quite proudly told was newly renovated and specifically wheelchair accessible. When I actually showed up, whilst the house was very openly planned, the toilet floor was not graded so when I took a shower with a hand held shower it would flood the bathroom, there were no mirrors at my level so I couldn’t shave, there were no power points at all in the bathroom, all the cupboards in the kitchen were too high for me to reach and all the power points too low. Just goes to show that a disabled person needs to be part of the process. Thanks again for trying to shed some light on the issue though.

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