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/

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~

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~