Feeling left behind…

Does anyone ever feel left behind? Do you ever feel like your disability interrupted your life? Sometimes it is hard not to feel that way. Although my disability has taken me on a completely different journey in life, I have often felt left behind and left out. When I was injured at age 17, I graduated high school on time with my class, but didn’t rush off to college. The year after high school I went to the Shriner’s Hospital in Philadelphia, PA and participated in a research program. It was like I went off to college, except I went to a hospital for 6 months. The rest of my friends went off to college, but instead at the hospital I was surrounded by patients, doctors, therapists and nurses.

I did attend college the next year at the University of New Hampshire and met some really great people. This was the first time I had to try to make new friends as a person with a disability. I got to know some nice girls in my dorm, but I found myself going home a lot because I was still trying to figure out how to fit in. In winter, college was a challenge, and the snow kept me from attending classes on the campus. It was hard, so my sophomore year I did a one year exchange program with Florida State University. Instead of going abroad, I got to go to Florida State in Tallahassee, and only had to pay for room and board. I came back to New Hampshire and dropped out of college because I still couldn’t deal with the snow. I ended up moving to Miami and transferred to Florida International University. The warm weather and accessibility of Florida was good for me. I never thought that weather would play a factor into deciding where I lived. So, a couple of years living in nice weather was great, but I missed my family. I have often thought about moving back to New Hampshire to be with my friends and family, but one thing led to another and I moved to Seattle in the year 2000.

I met a really nice guy and that is what brought me to Seattle. Once I moved here I started a new life, got a job, new friends and a new relationship. When I decided to move to Seattle, it was mostly because of the relationship I was in, but I also loved Seattle because it reminded me of New England. I joke that instead of dealing with the snow, I just traded it in for rain. Some of these major life decisions I have made, have been partially due to the fact that I have a disability, but other things that have influenced my choices too. I wonder if I would have ever left New Hampshire if I didn’t have my disability. Many of the people I grew up with still live around the New England area.

So many people I went to high school with never really saw how my life has turned out. After I had my accident I didn’t get a chance to see a lot of people because I only went to school a couple of hours a day in my senior year. In fact, I think a lot of people from high school still have the image of me right after I got out of the hospital and that is not how I wanted people to remember me. I looked terrible after my accident, not only was I in a wheelchair, but I had lost a lot of my hair because of an allergic reaction to medication. When I went to my 10 year class reunion a few years ago, it was the first time many people saw me, and I looked a lot like the person they knew before I was in a wheelchair, and it was great! Through Facebook I have reconnected with many people that I went to high school with, but I still feel left behind. Although, it has been a great way to reconnect with everyone it is hard. When I look at the photos of their lives, I see what I don’t have. If I didn’t have a disability- would I have been in those photos with them?

I will be honest; I still have those moments when I wonder how my life would have been different if my accident never happened. Would I be married with kids and living near my family? These are questions that will never be answered and I don’t want to dwell on them either. Each day I am just glad to just be here because July 18, 1993 could have been a day that ended up much worse. Instead, my disability has given me a gift in so many ways. I can’t explain it all, but at 32 years old, despite having a disability, I can’t help wonder will I still have what they have?

Tammy Wilber
~Feeling left behind, but that’s just fine~

What we can learn from children with disabilities

I always find it interesting how some people describe their disabilities. When people ask me what my disability is, I usually just say my legs are paralyzed from a car accident. Depending on the situation, I may go into further detail that my injury is a complete spinal cord injury at the thoracic 5th and 6th vertebrae. It is not only how you describe your disability, it is how you view it. Some adults I know are proud to have a disability, while others are maybe embarrassed about their disability. Everyone is different, but kids are another story.

I stumbled across an ad for a children’s hospital and it was interesting to hear what the kids had to say about their disabilities. There was a 10 year old girl with Cerebral Palsy in the ad who spoke very proudly about her disability and I was very touched by what she said, because I agree with her statement. Here is what she said:

“I’m different in my legs - Not my mind! There is nothing different about me inside - it’s just my outside appearance.”

This statement is very true, and to hear it from a 10 year old little girl just says it all. Here is a girl who was born with a disability and she already knows that – you shouldn’t judge a book by its cover!

In the interview she talked about how she always thanks other children when they ask her why she has to use a wheelchair. She wants to share with other children so they will be comfortable around her. As an adult, I get tired of explaining my disability, but I know people are just curious. It reminds me that no matter what age you are, we all need to have patience with people and educate them. If people with disabilities don’t take the time to educate society about our disabilities, then we can’t get mad if we don’t feel accepted. Next time I run into someone that asks me about my disability, maybe I should thank them for asking too, and explain - that I am also just different in my legs and not my mind!

Tammy Wilber
~I’m the same person, just sitting down!~

Resources for kids with disabilities:
Here is a great magazine for kids with disabilities: http://www.kidsonwheels.cc/
Here is a great book I heard called, Arnie and the New Kid by Nancy Carlson: http://www.nancycarlson.com/

Traveling Tips: Protecting your skin on long road trips in the car

This past Thanksgiving weekend I got in my car, as many other millions of people did, and headed out on a 3 hour road trip. One thing that I need to think about now, when I travel is how to make my trip as comfortable as possible. The car that I drive is a 2003 Saturn Ion, which is a great car because it is easy for me to get my wheelchair in and out of it, but the driver’s seat has a very hard surface. I often get uncomfortable after driving for about an hour because the car seat is not custom fit to my body, as my wheelchair cushion is. For example, I am always pressure mapped for a wheelchair cushion. I have to remember that if I spend long hours driving in my car, I also have to protect my skin so I don’t get pressure sores.

Over the past 15 years since I have been paralyzed with no feeling from the mid-chest down, my body and muscle mass has changed. I am amazed at how much muscle I still have in my legs, but over the past few years I have noticed more atrophy, especially on my backside. The bony areas on my butt which are called the ITs (Ischial Tuberosities) are more prominent now. I used to be able to travel in the car for long periods of time without worrying too much about pressure on my backside, but I now take the time to do pressure releases, stretch out and take breaks.

For this trip, I decided to make some adaptations to my driver’s seat, to help accommodate my comfort level and alleviate pressure on my back and butt. I put a car seat cover on the driver’s seat, and added a cushion and lumbar support. This way the lumbar support and cushion would stay in place underneath the car seat cover and if needed, I could adjust them. I had tried in the past to add other adaptations to the car seat, but the supports would slide around. These two adaptations really made quite a difference on my 3 hour car ride. The lumbar support helped me sit up straighter and the cushion helped protect my skin from sitting too long. When I got to my destination I wasn’t in a lot of pain and felt pretty good.

My return trip home, due to heavy holiday traffic, turned my 3 hour ride into 6 hours. Due to the fact that I took the cushion out of the car seat cover and used it where I was staying for other needs, I forgot it on the way back. I noticed a huge difference in my pain level without the seat cushion. I did some pressure releases and readjusted myself, but it wasn’t working. I could tell that I was putting a lot of extra pressure on my butt and knew I might have put myself at risk for a pressure sore. Once I got home I checked my skin and I was right, I had a red spot which looked irritated.

It has been a couple of days now and the red spot is a little better, but I am keeping an eye on it. I realize that as time passes my body is going to keep changing, my muscles may continue to atrophy, and it is my responsibility to make sure I check my skin. I have been very lucky over the years and have only had one minor pressure sore, but it still took quite a few weeks of bed rest to heal. I take my skin issues very seriously, because I have friends with spinal cord injuries that have been in bed up to a year because of a sore. I don’t want that to happen to me. Car seats are not designed to accommodate disabilities, so learn from me and take precautions to protect your skin while driving.

Tammy Wilber
~Driving and Sitting Safely~

What am I thankful for this Thanksgiving?

This past week I was reminded that I have a lot to be thankful for, and especially since it is almost Thanksgiving. Out of nowhere I received a letter in the mail announcing that a health professional that I knew for a long time passed away. She was a person who happened to be my nurse for the last 8 years. I am thankful that I had her as my nurse because she always went above and beyond the role of just a nurse, she was a friend! I didn’t find out exactly what happened to her until a couple of days later, and was shocked to hear she had battled cancer for a long time. I didn’t even know she was sick. The last time I saw her was in July when I was having severe and mysterious stomach pains and had already made to 2 trips to the ER with out anyone knowing what was happening to me. She specialized in working with people who have spinal cord injuries, so when I didn’t have a clue what was causing my stomach pains I went to see her because I knew I would be in good hands.

Over the years I have had some great health professionals, but it wasn’t until I moved to Washington State that I found a team who always made me feel like their number one patient. I was amazed at my first appointment how thorough my new doctor and nurse were. I was not just rushed in and out so the doctor and nurse could get to the next patient; I was shown compassion, respect, and received unbelievable care. I thought that at my next appointment they probably wouldn’t even remember me. Well I was wrong! No matter how little my medical issues were or how big, they always worked as a team to try and figure out what was the next move. They made sure that if I didn’t feel comfortable with the outcome of my appointment, I would get a personal follow up email or phone call from one of them. I had never heard of such a thing. My nurse made sure I was taken care of. If my refills on my medications ran out, and I forgot to call ahead, I could always count on my nurse to call in my prescription, no matter how busy she was. Also, if they had a full day of patients, but I called about something serious, they would figure out a way to fit me into the schedule. A couple of times they saw me during their lunch hour. Now that is dedication!

On this Thanksgiving I am reflecting upon how lucky I am to have such great medical professional’s in my life. I have an amazing doctor and am so thankful for the wonderful care I got from the nurse that worked with him for so many years. I will continue to receive medical care from my doctor, but I know the next time I go to an appointment it will probably be really hard. When I get there my nurse of the last 8 years will no longer be there to greet me and ask me how I am doing, it will be her replacement. She loved her job and I know it wasn’t just me that she made feel like her number one patient, she did this with a lot of other people. I also heard from a friend of mine that she kept her illness very quiet and worked right up until a couple of weeks before she passed away. That is how much she loved what she did. She lived for her patients and making sure they got the best care possible. I will never forget her, and will always be thankful she was my nurse!


Tammy Wilber
~Thankful for nurses everywhere!~

Trying to win the war on pain

Over the past 15 years I have struggled with pain and it can be very frustrating. When I wake up, the first 15 minutes of my day are the worst. I even bought a new mattress this year to try to help my body so I would not wake up in so much pain. The mattress helps, but it’s not until I get up move around, and do my morning stretches. Only after I take my muscled relaxers and pain medication will I start to feel better. It is just temporary though because I still have to take medication and stretch throughout the day to help with my pain level.

After I left the rehabilitation hospital I was on all sorts of medications, but after a couple of years I took myself off of them. For about 7 years I didn’t take any medications and it was great. Then everything changed and about 8 years ago I started hearing a strange popping sound in my left hip. I thought it was nothing just my body popping like when I crack my knuckles. Well I was wrong. After I had some x-rays taken I found out that my left hip was actually popping in and out of the socket. I have a complete spinal cord injury at the mid-chest level, so I can’t feel the hip, but my body reacts to this pain in other ways. I thought I would be a candidate for surgery, but after going in circles with many doctors around the country, there was no easy solution except to go on muscle relaxers and pain medication.

I have lived with this hip issue for about 8 years now and it continues to get worse. The hip is so bad that I have bone spurs on the top of my femur bone and the hip socket is barely a socket at all. It is just bone rubbing against bone, and the hip after many years is completely dislocated. It has affected how I sit in my wheelchair and my everyday life. If I am in my wheelchair too long I have to get out of it and stretch out a lot. Just recently my right hip has started making the same popping noise that my left hip did when it first started sliding in and out of the socket. It is hard to explain to people sometimes how I can’t feel the actual hip, but it still makes me have pain. My body will send me signals when I am in pain, such as shooting pains up my back, severe muscle tightness in my back, sweating and sometimes major headaches.

Since I have to take pain medication everyday, I have to deal with the side effects, like drowsiness. I work full-time so I load up on caffeine. People tease me because I drink Red Bull, not because I like it, but it does keeps me alert. Even though I am from Seattle, the Starbuck’s capitol, I am not a coffee drinker so Red Bull gives me my wings. My pain doesn’t stop there; I also have pain in my back from the metal rods and screws that are holding my spine together. That pain always radiates to my neck and I use a natural pain relieving cream to help as an alternative. I found a pain relieving cream that has a nice smell and is better then Icy Hot, so now I don’t have to bother my co-workers with that strange smell Icy Hot gives off. The pain relieving cream is really great, and I have been able to use it on my sore muscle spots in my back and neck. This has helped me to reduce my pain medication. I don’t think people understand that being in pain all the time is actually very tiring. Just dealing with the pain is a pain, there’s no other way to describe it. I have accepted that I will probably have pain the rest of my life, but I will also not let it slow me down. I will continue to look into alternatives because I would love to get off all the medications. I hate taking pills. I also have looked into getting surgery to get a pump implanted that will disperse medication directly into the spinal cord. Life goes on and I will continue to do my stretches, take my meds, make sure that I sit in my wheelchair correctly and go get the occasional massage.

Tammy Wilber
~Waiting for a pain free day~

What do I miss about life before my injury?

In the last couple of months people have asked me what I miss about my life before my injury. The answer is everything! How could I not miss things, it changed everything about how I thought my future would turn out. I miss not being able to just get up and go. I can still get up and go, but it is more like get up and in a little while I will go. If you add all the transfers I have to do in and out of my wheelchair and extra personal care, it adds time to my day. I am not trying to be negative just honest because it is the truth. I wasn’t born with a disability, I sustained one when I was 17 years old. I miss things that we all take for granted when we are used to having it. When you all of a sudden wake up one day and realize you can’t walk it is life changing. I missed out on my senior year of high school. I missed out on being co-captain of my soccer team. I missed out on my dream of becoming a nurse, but who knows even if that would have happened. I was young and could not predict how my future was going to turn out, and no one else can either.

My disability impacted so many aspects of my life, and something that I miss the most is being able to talk to someone eye to eye. It is hard to carry on a conversation with someone when they are a lot taller. I miss my family because I chose to move away from where I grew up to get away from the snowy winters. I miss the friends I grew up with and seeing them now having kids. I miss the fact that it is not as easy for me to just have a baby. I know I can have a baby and have thought about it a lot, but my body has already been through so much. That is why I would love to adopt a child someday. I miss being able to get to know someone easily without having the conversation always turn to my disability. I miss just being in the crowd and not always being looked at because of my wheelchair. I miss not being able to feel my legs. So here are some answers to the question people have asked me about what I miss about my life before I was injured. Now let me tell you what I have gained because of my injury.

Being injured at 17 years old, I was already in a transition period in life and not settled into college, marriage, children or a career. I could plan the rest of my life around my disability. When someone sustains an injury later in life the results have not always been good. Unfortunately, I have seen these injuries cause divorce, or a disruption in their careers. I have also seen many good things come out of it as well because when something traumatic happens it can bring family and friends closer together. After my car accident I really found out who my true friends were. My life is still not as I imagined it would be, but at 32 years old I think that is normal. Disability or not, I think I can still relate to many women that don’t have a disability. There is such thing as a biological time clock and I have felt mine ticking. If marriage and kids are in my future that is great, but I will not plan my life around it and I will not settle. If it doesn’t happen, it doesn’t happen. What I will do instead is live my life now and not stress about the future. That is one thing I am not sure I would have ever learned before I was injured. I can really appreciate the saying in life, “Don’t forget to stop and smell the roses!” The life lessons that my injury has taught me is to live for today, enjoy what you have because you never know what might happen tomorrow.

Tammy Wilber
~Remembering to stop and smell the roses~

Veteran's Day - A day to remember and honor our heroes!

Veteran's Day was not a day that meant much to me personally until I started meeting veterans coming back from Iraq. I was surprised to find out that the amount deaths because of the war in Iraq was 4193 troops. On this day I want to remember all of those men and women that have put their lives on the line to serve our country.

Since I use a wheelchair, I often meet veterans who have served in the military, and ended up with devastating injuries. Their lives will forever be changed, in a way I will never be able to relate to. Recently, I met a young guy who served 2 tours of duty in Iraq, and because of an explosion, he lost both legs, and his left arm. He can walk with prosthetic legs, but uses a power wheelchair to get around for most of his mobility. I have seen him in some magazines and read a couple of articles about him, but to meet him in person was a totally different experience. I only spent a few minutes talking with him but, all I could think about in the back of my mind was how young he was! Even though I am sure he has been through a lot in the past few years, he seems to have a great attitude. He has been traveling around and sharing his story with people all over the country, and visiting with veterans injured in the war. In a couple of weeks I will get a chance to hear his story in person and am really looking forward to it.

A couple of months ago, I was invited to an event hosted by the Northwest Paralyzed Veterans Association here in Seattle, WA. There I was the only girl in a wheelchair, not a veteran, and surrounded by 20 plus veterans that had flown in from all over the country. They were here in Seattle to participate in an annual Trapshoot event hosted by the Northwest PVA. It gave me a good chance to spend sometime with some local veterans and others from around the country. I was really impressed with the support and respect they all have for each other. I can tell that there is a very special and unique camaraderie among veterans, which is very understandable, since they can relate to each other. I am glad to have spent time getting to know them and I look forward to attending more of their events in the future.

So on this Veteran's Day, I will honor and respect so many brave men and women who have put their lives on the line, and remember those who are no longer with us.

To learn more about the Paralyzed Veterans of America organization visit their website: http://www.pva.org/


Tammy Wilber
~Remembering America’s Heroes~

Traveling Tips Part 1: Renting a car if you have a Disability

In the past 15 years since I have been using a wheelchair, traveling has never been easy, but I don’t let it stop me. Just a few weeks ago I had to go to Atlanta, GA, and I decided to rent a car. I have only rented a car one time before, and I couldn’t remember what rental company I used. I got online and started searching different rental car company websites to see which could provide me with the assistive devices I needed, like hand controls. At first my initial search was frustrating because you have to navigate your way through each of the websites to see if they even offered options for rental cars like hand controls for people with disabilities.

When I first went on the Avis website, it didn’t jump right out at me that they provided services for people with disabilities. What I had to do was type in “disabilities” under their search engine. They had an entire page titled “Special Equipment”, and which showed that they provided different options like hand controls, transfer boards, swivel seats, panoramic mirrors, and spinner knobs. To make the reservation, first I had to just make a regular reservation online, and then call the “Special Equipment” reservations phone number to tell them specifically what I needed. You have to make your request at least one day in advance so they can accommodate the request for special equipment.

I arrived really early in the morning at the airport because I had taken a red-eye flight, so when I went to the Avis counter to pick up the car to the lady behind the counter asked if I could wait about a half hour. What I realized is that everyone else had the option to take a shuttle over to the place you pick up the Avis rental cars, but that was not an option for me. The shuttle that takes people over was not wheelchair accessible, and did not have a lift. It was about 7:30 in the morning when I got there, and the lady was all by herself. She said once her replacement got there around 8:00, then she would walk over with me to where the car would be dropped off. While at first I was irritated that I couldn’t just hop on the Avis shuttle and go get the car by myself, it was actually easier that they just drove the car over. It saved me less transfers and less time of me carrying around my luggage, but it would be nice for the company to have at least one accessible shuttle. When I got the car I specifically had asked for a two door vehicle because it is easier to get my wheelchair in and out of the car, but instead they upgraded me to a larger 4-door car at no extra cost. They probably thought they were doing me a favor by upgrading me, but they didn’t ask me about it, and I would have preferred a two door car.

When my trip was over, I went to the rental car return area of the airport; I pulled up and waved my handicap placard out the window. Someone came over to me; I explained to them that I needed to be driven to the airport since their shuttles didn’t accommodate my wheelchair. They said no problem, and someone drove me to my gate. It saved me time and energy from having to get out of the car, take a shuttle, and carry my entire luggage with me. I also appreciated their customer service because they were very professional and asked me numerous times what else they could do to make my travels easier. When the lady drove me back over to the gate, I asked her if a lot of people with disabilities rented cars from Avis and she said that it is now almost part of her daily routine. I was surprised when I was getting out of the car that the lady had already put my wheelchair together, when most people don’t even know how to put my wheels on my wheelchair.

If I am traveling alone it can be a little stressful trying to get around, but I love traveling and I don’t let it stop me. My travels always end up turning into some kind of adventure. So to anyone that has a disability and you want to rent a car, give Avis a try and I hope you a have a good experience like I had. Here is a link to all of the information you need on their website: http://www.avis.com/AvisWeb/JSP/global/en/rentersguide/policies/us/policies_landing.jsp


Tammy Wilber
~Happy Travels~
(By the way, I do not work for Avis; I just wanted to share my positive experience about renting a car with their company)

What is the difference between “Barrier Free” apartments versus an “ADA” apartment?

When you use a wheelchair it can be hard to find accessible apartments and housing. Over the last 10 years, I have always been someone that rented an apartment and at one time I even had a small house. The internet is very helpful, but when I have gone online to find apartments, I always googled words like “wheelchair accessible apartments” or “ADA apartments”. A lot of information would pop up, but it was still always a challenge finding an apartment that fits my needs as a wheelchair user. I am lucky because as a paraplegic I don’t require a roll in shower or a lot of extra adaptations, but one day I may need things like this. Some simple things that I need in an apartment for it to be accessible would be things such as an accessible bathroom, easy access to reach a washer and dryer, a place to park my car, and access to the front door.

Once I rented a small house with a friend, which was owned by an older couple. When I first called to ask about the house, I did not share with them that I was in a wheelchair, I just asked if the house was on one level and how many steps there were up to the front door. After I saw the interior of the house, I realized it was very small and a ramp would need to be built, but everything else I could deal with. Although, the landlord was really apprehensive about renting to someone in a wheelchair, he had his lawyer draw up some papers, and asked me to sign them. Basically, the legal documents said that I would not sue him if I was to ever fall out of my wheelchair and hurt myself on the property. The main reason he wanted me to sign the legal document is because he said the house is not meant for someone in a wheelchair to live in. The papers also said that if I built a ramp it had to be removed when we moved out. I called the American with Disabilities Act hotline and asked them if this was legal and they said no. Even though I felt discriminated against, and didn’t want to sign the papers, I needed a place to live. I felt that it was wrong of them to do this because when you really think about it; there is no difference between me falling out of my wheelchair and hurting myself versus someone tripping and hurting themselves.

Just a couple of years ago I was looking for an apartment and felt like I was getting nowhere. One day I stopped by an apartment complex and wanted to look at an apartment and the office manager felt so bad because the “model” apartment that they show people was up a flight of stairs. She was really helpful though because she said that she thought that their sister property probably had an opening for a “barrier free” apartment. I had no idea what she was talking about? What the heck did “barrier free” mean? What I discovered about this terminology is that it seems to be a way to describe apartments that have access for wheelchairs, but may not be up code with the Americans with Disabilities Act. So, this is what I want to know from other people: Am I wrong about this, or is the term “barrier free” a way for an apartment complex to get around the codes of the American with Disabilities Act? I have seen apartments that are considered ADA approved and most of them seem to be up to code. A good example of some things that ADA apartments have that mine doesn’t is the kitchen has accessible/roll under sinks, low counters, handles and grab bars in the bathroom, maybe a roll in shower, wide hallways, push button doors, among other things.

Well, I ended up looking at the sister property and was shown an opening for a brand new “barrier free” apartment that was just newly renovated. The apartment I live in now works for me, but I am not sure if it would work for someone in a power wheelchair. So, what is it about the apartment that I currently live in that makes it “barrier free”? Well, it has accessible parking, there is easy access to the front door, all of the hallways are wide, and there is one very large bathroom instead of two. I assume all the other apartments that are above and below me with stairs, have two bedrooms and two bathrooms.

So, my advice to others is to do your research when you go apartment hunting. If you can be somewhat discreet when inquiring about accessible apartments because I have noticed that as soon as I started talking about the ADA , some people just shut me down. I believe that they know their apartment complex is not up to the code of the ADA, and they worry about renting to someone in a wheelchair. It seems like a lot more people respond positively when you talk about “barrier free” apartments. If you should happen to rent an apartment that is barrier free, you can make requests to make the apartment more accessible to your needs. When I moved in, I asked them to put in a lower peep hole in the front door for my personal safety so I can look and see who is at the door. They even offered to put in grab bars for me, but I said I didn’t need them. There are other things I have suggested as well, but it is a slow process. I just hope that suggestions I make to them will make the apartment complex more accessible for other people in disabilities, and they can learn from having a tenant in a wheelchair.

Tammy Wilber
~Living independent and barrier free~

The Candidates on Stem Cell Research

I know that stem cell research is a very controversial subject among people with disabilities, but I was forwarded this link on the candidate’s views on Stem Cell Research. If you are not informed on where the candidates stand on this issue, please go to this link.
http://pewforum.org/religion08/compare.php?Issue=Stem_Cell_Research

Time for People with Disabilities to vote- Your Voice Matters Your Vote Counts!

According to a website on the census of how many people have disabilities of some sort in the United States; are about 58 million people. With that amount of people affected by disabilities in the United States, this election is very important that we all get out there and vote! I wasn’t someone who always thought this way about voting because I thought politics was boring, but I am glad I woke up and am now educated.

With the elections right around the corner, I just wanted to pass along some important information about voting. Since I live in Washington State, I know that the deadline to register to vote is 30 days prior to the elections. However, if a person is not yet registered they have to go in person, TODAY, to a county elections department.

I am glad I did my research ahead of time because when I was helping my mom figure out how to register online to vote, since she is a new resident to Washington, I looked myself up and saw my status to vote was inactive. I didn’t update my new address when I moved, which was my error, so I am happy I got it all straightened out in time.

If you are from a state like mine and today is the last day to register, get going because it is so important for this election. If you are not sure about the voting requirements or when your state deadline is this website seems helpful:

http://www.declareyourself.com/voting_faq/state_by_state_info_2.html


If you are registered to vote and still are unsure of your decision on which you are going to vote for, I suggest taking a look at the candidate’s different websites:

1) Here is a link to Obama’s plan on disability issues:
http://www.barackobama.com/issues/disabilities/

2) Here is information on McCain’s plans for Veterans:
http://www.johnmccain.com/Informing/Issues/9cb5d2aa-f237-464e-9cdf-a5ad32771b9f.htm

3) Also, on McCain’s website, here is some information about people with disabilities, and what they have to say about McCain’s views of Americans with Disabilities:
http://americanswithdisabilities.johnmccain.com/AmericansWithDisabilities.htm

I am not going to share with you who I am voting for because I am writing this blog solely to educate you. I want you to make your own choice and remember that who you vote for is going to affect all of us in different ways, from health care to employment, and the future of the American’s with Disabilities Act. I know there are a lot of other issues to consider, but my game plan is vote for who I think is going to make my country better, and who is going to look out for people with disabilities.

Tammy Wilber
~Don’t miss the boat, Get out and VOTE!~

My Hero, My Inspiration, My Friend…

In life, we all have people that inspire us, and sometimes they don’t always realize how much. I hear from a lot of people that say I inspire them, and while that is a compliment, I feel it has a lot to do with my disability. Strangers have approached me and said I inspire them because I can drive a car, and go grocery shopping by myself. I do understand why people say this, and I don’t think it always has to do with the fact that I have a disability; it is just life. I think we all have people in our lives that inspire us to want to be better. When I really reflect on my life and think about everyone that is dear to me, the one person in my mind that always rises above the rest is my hero, my inspiration, and one of my best friends, Danijela.

In the fall of 1993, I was finally being discharged from the rehabilitation hospital after a long 3 month stay. I had gone through intensive physical and occupational therapy after I had a car accident, which left me with a spinal cord injury. I found out that a couple of weeks after I was discharged they were admitting another young girl with a spinal cord injury, and her name was Danijela.

Accompanied by her mother, Danijela was 13 years old when she came to the United States, and she was being sponsored by a non-profit group called Veterans for Peace. In the early 1990’s, Danijela was a victim of the war in Kosovo, and came to the US to get treatment after she had been shot. I was excited at meeting someone from another country with a spinal cord injury, especially because she was a girl close to my age. After she began learning English from watching television, we started sharing our stories with each other, and we have been best friends ever since.

After a few months at the rehabilitation hospital, the Veterans for Peace organization found a host family for her to stay with because she did not want to go back to a country that had a war going on. She transitioned into a high school, and I was so happy she would be living about a half hour from where I lived. Danijela said if she went back to Kosovo, it would have been very hard to live there with a disability because things are not very wheelchair accessible. After 5 months, Danijela’s mother had to go back to Kosovo and then Danijela was all on her own. She was by herself in the US, living with a wonderful host family, attending high school, and she had a permanent spinal cord injury, all at the age of 14 years old. Over the years she became part of my family as well; we helped her out on many occasions, and even took her to Disneyworld on vacation.

Fast forward to 2008, and at the age of 29, she now has a 4 year old beautiful little boy named Srdjan. A few years ago I got upset at Danijela because every year she was so great about always calling me on my birthday. Well, it got late in the day, so I called her because I thought she had forgotten. Instead, she informed me she was in labor and had given birth to a beautiful baby boy. Danijela is someone that has truly overcome many obstacles, which I admire her for. She works a full time job, is a single mom, and hasn’t been back to Kosovo in 15 years. I couldn’t image not having my mom, my dad and family in my life, and yet live half way around the world from them. Luckily after many years, her mother and father finally got to meet their new grandson, and visit with Danijela. They were only able to stay for one month here in the US, so they did as much as they could in a short time, to make up for the last 14 years that they all had missed. Unfortunately, I was not able to get back east to visit with her family, but I know it was a dream come true for all of them.

Danijela has shown me what it means to be a true survivor. When I have bad days or just need to talk, I call Danijela and she is always so upbeat and positive. When I think of her, I really have nothing to complain about because I have my family here, and Danijela's family is so far away. Danijela and I may live 3000 miles apart, but no matter where we are, we will always be in each others lives. When I went back east to visit my family a couple of months ago, I got to see Danijela, and it was like no time has passed. Since her son Srdjan is only 4 years old, she was trying to explain to him who I was, and I was blown away by what she said when she introduced me. Her comment was, “Srdjan, this is Tammy, the person who taught your mommy everything she knows how to do in a wheelchair.” After so many years of going through life’s challenges with a disability, I guess Danijela and I never really said how much we learned from each other.

It just goes to show you that sometimes you have no idea how much impact you can have on people. I am not perfect and I have bad days, but from the outside looking in, I can see how people can be inspired by the fact that I have a disability, and I am still able to work full time, volunteer, travel, drive a car, and do most anything anyone can do. What is really important is that once in a while; take a moment to tell people that they inspire you to want to be a better person. That is why I wanted to write and share this with Danijela, who is my hero, my inspiration, and my friend.

Tammy Wilber
~Inspiring others, and to being inspired~

On another note; I do have to point out that besides Danijela having such a positive impact in my life, if it wasn’t for the support of my mother throughout all these years after my accident, I don’t know how I would have gotten through many challenges. So, to my mom, she is my backbone, my strength, and also my best friend. If I wrote about her, it would be a novel, and I don’t know how to write a book, so now I am sticking with blogs.

Handicap Parking Abusers: Part 2, Top 10 Excuses

Most people have witnessed people parking illegally in a handicap spot, and maybe have even wondered what their disability is? If you have a disabled placard/license plate, you probably have heard some of the excuses I have listed below.

If you have not yet read my blog titled, “Handicap Parking Abusers: Part 1, Excuses, Excuses, Excuses,” then you can see how I have lead up to part 2. First off, I would like to state that if I think someone is parked illegally, I don’t just rush over and rudely ask them what they are doing. I use a nice approach because I understand that people have hidden disabilities. I wait until they get out of the car because, like me, my disability is not visible until I get my wheelchair out. If I suspect someone could have a hidden disability and I don’t see a permit, I will just say, “Excuse me, but I think you forgot to hang up your handicap placard.” This is when I usually catch people, because if their response is, “I don’t have one,” then I will know they shouldn’t be parked there. I find that at this point I can say nothing or try to make a point, and remind them what they are doing is illegal.
Top ten excuses I have heard over the years:
1) My foot hurts!
2) I have a disability; I just forgot my handicap placard.
3) I used to have a disability.
4) I am running errands for my mom, and it is her disabled permit.
5) People that just give you the “blank stare.”
6) Or how about the “nothing answer,” because the person speeds away or ignores you.
7) The best one is just people who say, “I am sorry and won’t ever do it again!”
8) I didn’t see the sign.
9) I will only be here for a second.
10) There was nothing else open.

These are just a few of the excuses I have heard over the years. If you would like to share any with me I would love to hear them.

Tammy Wilber
~To no more excuses, from the handicap parking abusers~

Handicap Parking Abusers; Part 1- Excuses, Excuses, Excuses

I have read many different blogs from people with various disabilities about their frustrations with people who abuse handicap parking. I have wanted to start a handicap parking enforcement program for a long time, and have heard about other communities who have successful programs. I know plenty of people that would volunteer their time to do catch these handicap parking abusers.

Just this past weekend I was trying be a good citizen by going to a local shopping plaza with some other people to remind people to register to vote. As I wheeled around the shopping plaza, I couldn't help but sit near some of the handicap spots to try and catch violators. In less than an hour I had 4 encounters, and here were their excuses:

1) One person apologized.

2) The second person was waiting in the car for his wife, as she returned something in a store. I "nicely" pointed out that he was parked illegally. I told him that the handicap sign does not say, "Please wait here for your wife.” He had the nerve to tell me to loosen up, get over it and he drove off. ( I was very nice to him)

3) The third person just ignored me, so I assumed maybe they had a hearing impairment,

and couldn’t hear me when I tried to talk to them. Or they just forgot to put up their placard. Who knows the real truth behind that person’s situation because I understand people have hidden disabilities.

4) The fourth encounter was with two men who parked their SUV in a handicap spot, only to have it breakdown on them. I asked them why they were parked there in the first place, and both men just started screaming at me. As they raised their voices, and called me very ugly names, a nice man walking by asked the men, “Why they were harassing a women in a wheelchair”. I told the man that they were parked illegally and he called the cops. I didn’t get to see the end result, but since their car had broken down, I hope they were ticketed, and towed.

This has inspired me to want to get some people with disabilities together and go to the local police station to try to start up some kind of handicap parking enforcement program. Being in a wheelchair this is truly when I feel so disrespected by people. Why can’t they just admit they were wrong? When someone parks illegally in a handicap spot and they see someone in a wheelchair approaching them, why don’t they get the heck out of the handicap spot? Some people just don’t care, and when they have the nerve to speak back to you it just boggles my mind.

I could go on and on about this subject, but what I would like to hear from other people is how do you handle the situation with handicap parking abusers?

Tammy Wilber
~Handicap parking abusers, are just disrespectful and wrong ~

Do you ever feel like the only female in a wheelchair?

When I was first injured, it took 6 months for me to connect with another female in a wheelchair to ask her women related issues about spinal cord injury. This happens to a lot to newly injured women, so my friend Anne and I wanted to start a group, and in 2005, an opportunity presented itself. I am on a committee for a group called the SCI Forum, at the University of Washington Medical Center, which holds monthly meetings to provide current information on a variety of topics relevant to the SCI community. I made the suggestion to have a “women’s only” night forum, so Anne and I gathered as many women with SCI we knew, and ask them all to make their best effort to attend. Well, it worked and at the end of the meeting we gathered 12 women’s contact information, and that was the beginning of what we first called the Women’s Wheelchair Washington Network. “Since the majority of wheelchair users have been male, we felt a need for a support network for women, where issues and problems unique to women can be discussed,” said Anne Bostwick, who has SCI and is the Co-Founder of the group.

Over the next 3 years, our group has grown beyond just Washington State. We recently changed the name to the Northwest Women Wheelers Network (NWWWN). “We now have 56 members in all age groups, including single mothers, working women, and retired women. It has been an especially important resource for newly injured women,” said Anne Bostwick. The network has been connecting through a list serve, but we have started building a website.

The NWWWN also holds gatherings like barbeques, recreational events, jewelry parties, holiday parties, and some members started a book club. In mid-September, we held our s annual “end of the summer barbeque”, which VARILITE sponsored. When I told the members that VARILITE was going to sponsor the location, the women were thrilled because no one has ever sponsored any of our events. At the picnic, everyone gathered, met new members, socialized with old friends, and enjoyed the wonderful weather. Sawnie Geer, a member with Multiple Sclerosis, who could not attend the VARILITE sponsored picnic, said that this group has been more than just a network, “The NWWWN means a chance to meet new friends and get some new insight into living with a wheelchair. It also lets us "vent" in a positive way with others that understand what we're going through.”

I am just so happy to have the 56 women with various disabilities to be able to reach out to when I need it. Just knowing that I have a group of amazing women, that come from such diverse backgrounds, to share information with and ask questions about is great. It makes me feel like I am not alone, and I know other members feel the same way. It has been wonderful to help start this group and see how much it has grown in just 3 years. The Northwest Women Wheelers Network has done so much for so many people, and I can’t wait to see it grow! My dream is to see this group keep growing, and maybe it will one day become a national group, but for now I am happy to have a place to not feel like- the only girl in a wheelchair!

Tammy Wilber
CO FOUNDER of the Northwest Women Wheelers Network
~It’s about women on wheels, not just heels~

I thought I was short before I was in a wheelchair!

(Not as tall as I used to be)

Being in my wheelchair is so challenging at times because I am short and people don’t see me. I thought I was short in high school, being only 5ft 2 inches. I try to be very aware of my surroundings, but since I only sit about 4 feet high, I am always getting bumped into. Have you ever been waiting in a line at a store and the person standing in front of you just backs up? Next thing you know they are tripping over you and falling in your lap. I usually just say – If you wanted a place to sit, all you have to do is ask nicely. Seriously, does it ever just get to you, being so short? I was disappointed this past summer when I went back east to visit my niece and nephews- who are 6, 7, 11 and 12. All of them are now taller than me, even my youngest nephew who is only 6. I do have to say, giving kids rides on my lap is so much fun because it gives them a different perspective of my wheelchair. Next thing you know I became an amusement ride and the kid’s line up to take turns for a ride on Aunt Tammy’s lap.

It is an interesting world when you are so short. I love being stuck in a crowd and all I can see is people’s behinds or the front of them. Also, with the different fashion trends now-a-days, people who wear their pants low I have one thing to say “Pull up your pants!” I don’t need to see your underwear so up close and personal. I remember when I went to a Grateful Dead concert in college, right before Jerry Garcia passed away, I was suffocating because I got stuck in the crowd. My friend was with me and we kept moving our way up to the front .The further we went, the more we got stuck. It got to the point where we could not move in any direction and were completely stuck in a particular spot. It was so crowded and hot that day, I started hyperventilating and was dehydrated. Then I felt like I was going to faint. My friend tried to get a hold of the medic’s, but the crowd just wouldn’t move. Once we finally got the medic’s attention, they couldn’t get to me and I was getting worse. So we had only one solution- lift me up in my wheelchair. I thought no way, but I didn’t care I just needed to get out of that crowd. So, right before the Grateful Dead came out onto the stage, the crowd picked me up while I was still in my wheelchair, and people carefully passed me over the crowd and put me on the concert stage. I guess you can say I crowd surfed in my wheelchair at a Grateful Dead concert! That is not something that happens everyday. After I was placed on the stage, and even though I wasn’t feeling well, I couldn’t help myself, I turned around and looked at the endless sea of people. Then I put my hand up like – YEAH!! I will never forget that moment being on the stage that Bob Dylan and the Grateful Dead played on. The story ends with me resting in the medic tent for a while and then I enjoyed the concert in a safe location.

Another thing about being short is that I often feel left out of conversations too. I will be sitting in a group, and while people are talking they are all eye level with each other, except me. Sometimes I miss out on what people are saying or I will try to talk and people won’t hear me. I have tried numerous times to vocalize so people can hear me, but I feel like I am yelling. Also, if I am wheeling in the mall or cruising around somewhere it can be tough to have a conversation with someone that is able-bodied because I am often looking down towards the ground. I often look down while I am wheeling because I am trying to avoid things like cracks in a sidewalk. Or if I am not looking where I am going I could run right into someone. I am jealous of the people that have lifts in their wheelchairs. I love the power wheelchairs that elevate, or the IBOT that goes up on two wheels. I got a chance to try an IBOT out and it was amazing. There are even manual wheelchairs out on the market that act as a standing frame and it is pretty cool. Being at eye-level is something I miss, but being short makes it easy to win a limbo contest!

Tammy Wilber
~Short, yet Sweet~

Tails and Toes- How many do I have to run over in my wheelchair?

For years I have always tried so hard to be very careful about not running over people’s feet in my wheelchair, especially their toes. Heck, if it happens, I will always feel bad. I feel like I need to take out personal injury insurance in case I ever break someone’s toe. At least I use a manual wheelchair and if I run over someone’s toes it is not a heavy power wheelchair- ouch! I am sure either wheelchair hurts no matter what, but I try to be careful. At times there are moments when people step on my feet if I am not in my wheelchair. I often transfer out of my wheelchair at movie theatres and of course on airplanes, and that is when it happen's the most. Sitting in a dark movie theatre, I can’t stand up to let someone by, so they step on my feet. Then I get an apology, and look at my foot to make sure nothing is broken since I can’t feel it. Or when I am on an airplane, I always prefer a seat by the window. Since I get loaded first on the plane, and if my seat assignment is not by the window, I explain to the flight attendant that I HAVE to sit by the window because I cannot get up to let people by. Trust me, it works to tell the flight attendant that because they want to help and I usually will get a window seat. If not, I take the window seat anyway and just tell the passenger that they will have to crawl over me if they want to get up during the flight. Most passengers give up their seats.

On a different note, the title of this includes tails, and this is in reference to my own cat. I have this cat, which ended up with the boring name of just Kitty, and after 10 years she still doesn’t get it. When I am wheeling by her she doesn’t move out of the way. I am surprised after all these years my cat’s tail hasn’t been amputated. I do look out for her, but even when she is laying right in my path, I yell MOVE, and she just looks up at me like no way! I have taken chunks of fur out of her tail numerous times, and she let’s out a screeching meow, but she still hasn’t learned, and probably never will.

So, to all the tails and toes out there, watch out for wheelchairs, and we will do the same!

Tammy Wilber
~To wheeling and watching~

People are always staring at me- Is it my disability or my good looks?

Have you ever noticed that when you are in a wheelchair, people just stop and stare? I always notice people staring at me when I am taking apart my wheelchair and putting it in my car. I also notice it too when I am out in public places. I don’t always notice the looks as much in public because they are looking down at me, and I don’t have eye contact with them, since I sit low in my wheelchair. When people do stare at me, in my head I make a joke that they are just staring because I am so good looking, but I know it is just curiosity. For me it is just a part of my life to put my wheelchair in and out of the car between 6-10 times a day, and when people stare, I do think what are they staring at? I try to be understanding about it because people don’t see someone taking apart a wheelchair and putting it in a car that often. It is probably interesting to watch, and it shows them people in wheelchairs do get out there and live life, just in a different way.

I always try to be nice to people when it comes to educating the public about disability issues, but I am only human and don’t want to be stared at all the time. I feel like I am putting on a show and when someone looks at me too long I feel like saying something to them. For example, “Take a picture, it will last longer!” Or, “Hey, you’ve been staring at me long enough do you want my phone number?”

I think that people with disabilities/wheelchair users can all relate to being stared at to some extent and that it truly can test our individual patience. I try very hard to be polite and just pretend I don’t know I am being stared at. Although, I am hoping one day if it is just my good looks, maybe I will get a date out of it.

To everyone that hates to be stared at here is my advice:
1) Just try to not acknowledge it is happening.
2) Try to be polite and remember patience.
3) If it does bother you- try not to get angry, just stare back at them for a minute.
4) Also, remember that it is mostly just human curiosity.

I can remember when I was first injured, it was hard to get used to people staring at me. I used to have really low self esteem about my body image and how I looked in a wheelchair. Fast forward 15 years later and I am okay when people stare, but it comes from many years of learning to be patient.

Tammy Wilber
~ To not Caring, about Staring ~.

Remembering Christopher Reeve on his 56th Birthday, He will always be our Superman!

It is hard to believe that Christopher Reeve is no longer with us, and of course the loss of his wife Dana as well! Today would have been his 56th birthday. He has done so much for the disability community, and specifically for people with spinal cord injuries. I remember how shocked I was when I first heard about him being injured. I mean he was Superman!

Christopher Reeve is someone that brought a face to people with disabilities and the hope of trying to find a cure. He started the Christopher and Dana Reeve Foundation, which does everything from fundraising money for research, to being an advocate for everyone with disabilities. I almost had the chance to meet him years ago at a disability camp that I went to in Newport, Rhode Island called Shake-A-Leg. He was at the camp to speak to all the campers with disabilities and missed his visit. However, I had heard an interesting story from one of the other campers that got to visit him after he spoke at the camp. The camper said that just by spending a few minutes talking with him, he realized that if Christopher Reeve can live with his disability, so can he. The camper was someone that was newly injured, very depressed, and didn’t want to go on with life. Just by being around Christopher Reeve, not only was he inspired by him, but he said Chris’s spirit was contagious. I never found out what happened to that camper, but I hope he is still doing great and that he will never forget his visit with Christopher Reeve.

I used to work for an injury prevention program called Think First, which was a non-profit organization and for about 5 years we received a $5000 grant from the Christopher Reeve foundation. This money was allocated to our “disability public speaker training program.” We would find people in the community with brain and spinal cord injuries and taught them how to tell their story. These speakers would then go on to educate students of all ages in school assemblies to use their minds, to protect their bodies. I first started out as a participant in the speaker training program and within a year I was running it. So, without the help of the Christopher Reeve foundation I would have never gone on to become a public speaker, and a teacher to others.

A very good friend of mine, Elaine Stefanowicz from Tacoma, WA, was Ms. Wheelchair 1996 and went on to become Ms. Wheelchair America in 1997. Through all her travels as Ms. Wheelchair America, she had the honor of meeting Christopher and Dana Reeve at a benefit for their foundation and this is what she had to say about them both.

“It was a thrill to be able to meet Christopher Reeve and his wife Dana. It was truly an experience I will never forget,” said Elaine Stefanowicz, Ms. Wheelchair America 1997.

In the spirit of what would have been Christopher Reeve's 56th birthday, I am going to honor him and his dream of seeing a cure for spinal cord injury by making a personal donation of $56 dollars. I hope that this will inspire some of you to do the same.

Tammy Wilber, Injured with SCI since 1993
~Today’s Care. Tomorrow’s Cure.~
(The motto of the Christopher and Dana Reeves Foundation)

TIRED OF FIGHTING FOR MY RIGHTS FOR WHEELCHAIR ACCESS!

Does anyone ever get tired of fighting for your rights that we are entitled to, for wheelchair access to public places? I know this is just one of many things that the American with Disabilities Act covers, but we all know that the entire country is not wheelchair accessible.

After 15 years, I still try to be nice when I talk to people about how they can better improve wheelchair access such as a bathroom in a restaurant or even handicap parking, but after a while it get’s tiring. I have never sued anyone over wheelchair access issues. Instead I try to make suggestions and work with them, rather than just bark at them and say FIX IT OR I WILL SUE YOU! I just try to remember to “treat other people as I would want to be treated,” but it doesn’t always work. Today is a perfect example how frustrating it can be to fight for my rights. I live in Washington State and it was time to renew my tabs on my car, so to make it easy I went online paid the fee and chose the option pick them up at a location that was easy for me instead of paying to have them mailed.

So here is what happened when I went to pick the tabs. I pulled into the handicap parking spot located right in front of the licensing agency, got my wheelchair out locked the car and sat there thinking where’s the ramp? I looked for a ramp and didn’t see one anywhere. I looked around the parking lot, but stopped because the parking lot was not paved well, there were big speed bumps and there were lot’s of cars pulling in and out. So I sat there contemplating what to do and looked at the curb in front of me and thought I would test out my wheelchair skills. I use a manual wheelchair so I occasionally will pop down curbs, but I am not very good at going up them. So I found the lowest part of the curb, got my momentum going and popped up the curb. I usually don’t like doing curbs forward because I feel like I could fall out of my wheelchair because of my balance. I made it up the curb safely, but did feel a little like I could have catapulted out of my wheelchair. I sat there thinking all of this just to pick up my license plate tabs, heck I should have just paid the extra shipping to have it mailed to my house.

So, I go inside and very smiley and politely asked the lady behind the desk why there was no ramps, and she said she didn’t know because they don’t own the property. I told her about my dilemma and she couldn’t have cared less. All of a sudden she remembered there were ramps on both ends of the plaza. I asked her for the property manager’s phone number and she was happy to comply and give it to me. I got my tabs, went out the door and went to the opposite end of the plaza to find the ramp, meanwhile my car was right in front of me and the plaza is a long building. I went all the way to the end of the plaza and there was no ramp. Instead of a ramp the sidewalk just met the pavement of the parking lot because it evened out on the slope of the hill. So, I go through the parking lot, avoiding cars, slowly rolling over the large speed bumps, and got back in my car. At this point I was frustrated, but waited a few minutes to gather my thoughts and called the property manager. I was very polite on the phone to the property manager and explained my situation. I told them I like to educate people and make suggestions about accessibility and how they can make accommodations very easily. I first suggested that they put a sign up to say where the “ramps” were located. Putting up a sign was only a suggestion for a temporary fix, but said they should add an ADA wheelchair ramp next to the handicap spots- then I started hearing yelling. The property manger was yelling, “I don’t have time for this, I don’t have the money, and the economy is bad.” and they told me to sue them if I wasn’t happy. I kept my cool, asked them to calm down and why can’t they just put up a sign? Then click! That was the end of the conversation because they hung up on me. So in this case being nice didn’t get me anywhere, and when I say nice I was being extremely polite! I could have screamed back at them, but I didn’t. So, my question is now what? Do I file a complaint with? Do I seek out a lawyer? Do I keep calling them while still remaining nice about it? There are many things that I could do, but for right now all I can say is, I am just too tired to deal with it and won’t be going back there next year.

Don’t get me wrong I know how lucky I am to have these rights because of the Americans with Disabilities Act. I just want to be proactive and help improve access for wheelers. I have heard terrible stories from around the world of what it is like for people with disabilities, and I know I am very fortunate. I just want to improve my own access and that is why I am asking for suggestions and feedback for my situation and would like to know what you have done in these kinds of situations?

Tammy Wilber
~Tired of Fighting for my Rights~

Please Stand for the National Anthem - BUT I CAN'T!

How many times in your life have you gone to a local football game at a high school, attended a professional baseball team game in your local town or in my case growing up, attending Monster Truck shows and heard those famous words- PLEASE STAND FOR OUR NATIONAL ANTHEM?

Growing up I attended Boston Red Sox games and Monster Truck shows that asked me to stand or rise for the National Anthem and just like anyone else I just did. After I became paralyzed in July of 1993, those words had a different meaning for me. (In case anyone is wondering why I attended Monster Truck shows, it is because my parents built the tracks) The next time I went to a local event and they asked me to stand for the National Anthem, it was like – oh my God I can’t! It never really bothered me until I became the flag bearer for a local Roller Derby league in Seattle, WA called the Rat City Roller Girls. I got involved with this group because I used to work with someone that was a coach of the league and a bunch of us went to watch it because I never knew what roller derby was. After attending my first roller derby I thought how cool- women on wheels! I am a woman on wheels- just a different set of wheels. My wheels are on my wheelchair and not my feet.

So after debuting as the flag bearer for the Rat City Roller Girls I remember hearing them say “Please stand for the National Anthem.” Well this was a different situation this time because I didn’t need to stand for the National Anthem it was my responsibility to have the flag which I display from the back of my wheelchair and roll around the derby track while someone is singing it. This got me thinking about what would be a more inclusive way for any announcer at any event to ask people to stand for the National Anthem, without leaving people out that cannot stand up due to some type of disability and I got it! Actually, my mom suggested it and it is really easy and it includes everybody! So instead of “Please Stand for the National Anthem” or “Please Rise for the National Anthem” my suggestion is “For those who can, please stand for the National Anthem!”

I know it may not sound like a big deal to some people, but the first time I heard it, it was really a nice feeling. I felt included! I felt like I was apart of the crowd that was all standing up to salute our American Flag. Since I am the flag bearer at the Rat City Roller Girls events once a month, it means a lot to me to hear them say that.

I have even gone on further to make this suggestion at a church I attend. I don’t go there very often, but this past Christmas Eve Mass, the church was packed more than usual because of the holiday and there were a lot of people in wheelchairs there that night. We spent most of the evening singing and the Pastor repeatedly said, “Now, please stand to sing Joy to the World,” then the next song, the Pastor would ask the church to “Remain standing for another song.” Well, again it made me not feel included in the group. Now I don’t want people reading this to think I take things to seriously or get offended easily, but I just find it a nice gesture to hear the words, “For those who can, please remain standing for our next song.” I took it upon myself to email the Pastor of the church a few days later and thanked them for a nice holiday mass, and made the suggestion of how they could rephrase the way they address the congregation to include everyone. I got an email back from the Pastor thanking me for the suggestion.

I hope some of you can see my point of view, and know that I am not complaining about this. I just see it as another way to educate people. It is just one more thing for people who cannot stand up to be included in a ritual that takes place in America everyday. I hope that some of you especially, with the election coming up, will take it upon yourself to think about it and if you are attending an event, whether it is at your local church or a football game make the suggestion to the announcer to include everyone in the audience by encouraging them to say, “For those who can, please stand for the National Anthem!” Just think because of your suggestion, someone in that audience like myself who is in a wheelchair, will really appreciate it!

**A special note to everyone that participated in the Paralympics- Thank you for representing USA!**

Tammy Wilber

WORKING AFTER A SPINAL CORD INJURY

In 1993, I knew that my future would never be the same when I sustained a spinal cord injury at the age of 17 years old. My best friend and I had already planned our futures - we were going to go to the same college, become roommates and I was going to become a nurse. It wasn’t until I met with a Vocational Counselor during my rehabilitation process that they asked me " What are you going to do with your future after you are discharged from the hospital? " I wasn’t even thinking about that yet because I was still focused on dressing myself. Besides having to deal with the fact that I had a disability at age of 17, my mind was spinning with all of the lifestyle changes. What was I going to do for a career now that I was a person with a disability who used a wheelchair? Could I even work a full-time job?

I did realize the first thing that is very important for anyone with a disability is EDUCATION! I had always planned to go to college but over the next few years of trying to figure out what I wanted to do; I switched colleges and majors and moved around trying to figure it all out. After feeling like I was just becoming a full-time student, I decided to take a year off and actually go to work. I found a place I could volunteer and told them I wanted to be treated as a part-time employee. Because I didn’t want to lose my social security benefits, I worked without pay but I didn’t want to be treated differently because I wasn’t taking home a paycheck. After almost a year of being an “Administrative Assistant” for a non-profit organization that provided recreational services for people with disabilities, I had more confidence in myself and my ability to work.

It has been ten years since joined the workforce and I have faced many challenges. I have faced discrimination, had to give up a great job because the insurance was terrible and have had to explain to people why I left in the middle of a meeting - I had a bowel accident. At one point I even had a supervisor ask me if I could appear “less disabled”. I still haven't figured out what they meant by that comment, I only know that it was hurtful. I do feel blessed with the different people and places I have worked. My employment has always revolved around the medical and disability community so I always have felt my work environment is very disability friendly and people understand personal issues, but it is still difficult at times.

Other people with disabilities that I know often ask me, “How do I work a full time job and handle everything?" I always have the same answer and I reply by saying, "I just do what I have to do, but it didn’t happen overnight. This journey is still going to be a lifelong experience and I will just keep going." I do feel very blessed because I have great friends, a very supportive family, a great job, and I just happen to use a wheelchair.

Tammy Wilber
VARILITE® Marketing Representative and Wheelchair User since 1993

9/11 A DAY TO REMEMBER THE PEOPLE WITH DISABILITIES/WHEELCHAIRS THAT COULD NOT MAKE IT OUT AND SOME IDEAS HOW YOU CAN BE PREPARED FOR EMERGENCIES

Well today we are reminded of a horrible tragedy that happened 7 years ago! I can remember hearing the phone ring early in the morning and I thought after the 7th or 8th time of someone constantly calling it had to be an emergency. My mom was calling from the east coast when it happened so by the time she finally got me out of bed about noontime (I still can’t remember why I slept in so late) - she had been calling to tell me not to go to my job which was in downtown Seattle because no one knew if there was going to be any more attacks on different cities. I stayed home that day and watched the same footage over and over again in disbelief that it had happened.

My roommate at the time had gotten a phone call because his cousin worked in the World Trade Center in one of the towers and his parents called to say his cousin was okay. Since his cousin woke up late that day he was on the train going into work when the towers had been hit. As I sit here writing this I think of all the people that lost their lives, but I also am thinking about all the people with disabilities and wheelchair users that never even got a chance to get out of the buildings. I heard all kinds of stories about people being carried down flights and flights of stairs because like me they cannot walk. I have also heard of those that never even got a chance to get out and just sat in their wheelchairs, then the building collapsed. It is actually hard to even finish writing this because it is so emotional to think about. So, on this day I am remembering everyone who lost their lives, but I am also truly thinking about the ones who never even had the chance to get out!

If you are someone who lives or works in a large building and you have a disability there are many resources that can assist you with ideas for emergency preparedness. I know that when my bedroom was on the second floor (I had a stair lift with another wheelchair at the top of the stairs) and if I was ever home alone I would sleep on the couch down stairs because I had an extreme fear of fire, and still do. I contacted my local fire department to let them know my situation and they were great each year about calling my house to see if I still lived there. I guess they had a list or something of people with disabilities for emergencies. I lived in a small town at the time and thought that it was amazing that they would check each year to see if I still lived there. I knew that if there was ever a fire they would come to my rescue.

The other day when I was at the grocery store I ran into some local fire fighters here in Seattle and I asked them if they had some kind of system to keep track of people with disabilities. I was shocked when they said no. I couldn’t believe that with all the technology we have today that they don't keep track of people with disabilities in their community. If there was ever a fire at my apartment complex nothing would notify the fire department that a disabled person lives there. That doesn’t make me feel very safe, so for my own peace of mind I now have many fire extinguishers that are around my apartment and I have created my own fire safety evacuation route.

In case you worry about your safety here are some resources that I found very helpful

http://www.disabilitypreparedness.org/

http://www.unitedspinal.org/pdf/WheelchairFireSafety.pdf


Tammy Wilber
VARILITE® Marketing Representative and Wheelchair User Since 1993

VARILITE SPONSORS CAMP ACCESS

VARILITE® Supports Recreation for All
A Report from Camp ACCESS 2008
Flowing Lake, Snohomish, Washington, USA

Camp ACCESS has a motto, “Never Confuse Disability with Inability,”
which is a perfect way to describe this camp’s goal of introducing young campers to the latest in adaptive recreational activities and equipment. Camp ACCESS was established in May of 2002 to provide a summer camp experience to kids with physical disabilities. It is the belief of the camp’s founder Ernie Butler, the Executive Director of the Northwest Paralyzed Veterans Association, that if the camp can help improve the skill level and confidence of the campers through recreation, then it can also help improve their confidence with day to day living skills. The 20 campers were kids with varying disabilities that experienced activities such as power wheelchair soccer, adaptive kayaking, tubing, sailing, hand-cycling, fishing, and swimming. Also available were skill building activities such as the wheelchair obstacle course, designed after the obstacle course used at the National Veteran Wheelchair Games.

I have been a camp volunteer for two years, and it was great to come back this year on behalf of VARILITE®. My role was to be a Team Coach, and work with the campers ages 7-12. Camp ACCESS utilizes Certified Recreational Therapists as Team Leaders and the Team Coaches are mostly paralyzed veterans, I was the only female coach. It was an honor to work with the other three Team Coaches, who are not only disabled veterans, but very accomplished athletes. They have participated in the National Veteran Wheelchair Games; some handcyclist’s completed the “Seattle to Portland” bike marathon, and even a Paralympian was among the crew of coaches. There were also many other wonderful volunteers such as the “Camp Buddies”, which were high school students who were partnered up with a camper to provide encouragement and assistance with simple care needs.

In past years VARILITE has been a great supporter of Camp ACCESS by providing camp equipment donations. The Missing Link™ tents and the Outfitter Wing™ tents that were donated this year provided both shelter and respite for the kids from the hot sun and occasional rain. The Platypus® hydration packs given to each camper helped keep them hydrated and were unique because the kids could attach them to their wheelchairs. A new item we donated this year was the Camp Seats™ and they were a big hit with the campers. Many of them used the seats to put on the ground if they transferred out of their wheelchairs so they were comfortable without having to sit on their own wheelchair cushions on the ground. One camper’s mother made a point to seek me out and thank me and Cascade Designs because she appreciated how much she put the Camp Seat™ to use. She said it helped her when she transferred her son out of his wheelchair onto the ground for him to get into the water, and she didn’t have to worry about him sitting on the hard ground or having to get his own wheelchair cushion all wet.

There were also many young female campers, and as the only female coach with a disability I was able to be a good role model and help build enthusiasm and confidence in these young women. I wanted to show all the campers that despite having physical limitations, they can grow up, get a job, be independent, drive a car, enjoy outdoor recreation, and live life to the fullest. One of the campers that I will never forget was a young girl who had been home schooled for the last seven years because kids used to make fun of her disability and sometimes even pushed her out of her wheelchair. A few days after camp she was going back to school for the first time in seven years as a freshman in high school, and she said that attending Camp ACCESS this year was very important because the camp helps her self-confidence and social skills. I know we’ll keep in contact and that relating my experiences made her more confident about entering high school. I hope she is having a great week at her new school and making lots of friends.

Attending Camp ACCESS was such a wonderful experience because in 4 days I saw campers expand their personal limits, try new activities and develop personal skills and friendships. VARILITE’s sponsorship is more than just donating time and equipment; it is about helping change the lives of kids with disabilities one at a time in many different ways.

Tammy Wilber
VARILITE® Marketing Representative