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/

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.

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~

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 ~.

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~