I was born with Spina Bifida, at a time and place when no one knew much about Spina Bifida,
Caswell County, North Carolina.
Spina Bifida is a condition that affect the spine and is usually apparent before birth. It is a type of neural tube defect. The neural tube does not close all the way, the backbone that protect the spinal cord does not form and close as it should, often resulting in damage to the spinal cord. It can happen anywhere along the spine, the size and the location determines the severity of the disability.
My location was very low and the size was small. So my early development was about normal. I was walking by the time I was 1 year old – but there is an operation that babies need very soon after birth to close the opening and prevent any further damage to the spinal cord that the doctors at the hospital where I was born, did not know about. I had that operation when I was 8 years old and by that time I was already in leg braces and on crutches.
When I was born the doctor told my parent to take me home and raise me like their six children before me, but they didn’t think I would live very long. That’s what they did, and I am thankful every day that I had the parents that I had and was born into the family that I was. They never-ever told me that I could not do something because I had a disability!
I learned very early in life that if I want to participate in life I would have to teach myself how, and I would have to adapt to society because society was not going to adapt to me, and I had no reason to believe that it ever would.
I went to public school from 1st grade to 12th grade. I learned how to climb steps, and pick myself up when I fell. I rode the school bus. At first my brother would put me on the 1st step, but as l got older I learned how to get on myself.
My dad was a tobacco farmer and my mom was a farmers wife, that means she took care of the house, the kids, the garden, and still helped in the tobacco.
I know my parents worried about me, but they allowed me to grow, to learn and to explore, and they probably knew that they could not stop that from happening.
I grew up on a farm and loved it, and tried to participate in every part of it, riding in the back of a pickup truck, in a tobacco sled being pulled by a mule, on the tractor with my dad, swimming in the pond and catching a ride back to the stable on old Nellie the mule at the end of a long day for her in the field. And that was when I wasn’t sitting on a table at the tobacco barn handing tobacco leaves. Which was most days in the summer.
When I was in high school Hyco Lake was built about 10 miles from out house and my brother and I spent the weekend there with my older sisters and brother in laws, nieces and nephew learning to ski. My brother in law made me a round board so I could sit ski behind the boat. We called it “the disk”. I probably invented sit skiing!
I learned to drive my dad car by driving on the dirt roads around the farm. I got my learner permit when I was 16, but I had to wait until I was 18 to get my permanent license because you had to drive a stick shift at that time to pass drivers ed in school. Not having a right hand made that a little hard.
Oh, did I mention I was also born without my right hand. I have no explanation as to why that happened, I’m sorry I often forget that little fact myself. It’s normal for me so I just don’t think about it being different . My mom often forgot it to, but that’s another story.
When I was a senior in high school I told my advisor that I want to go to college. She told me about a organization called Vocational Rehabilitation. She said they could help me go to college. And they did! But when I told her I wanted to study special education, an teach children with disabilities, she said that I could not. That would be a waist of time and money, no one would ever hire me to work with children. I think this may be the first time I was face with the fact that I may not be allowed to do something that I wanted to do, simply because I had a disability! I thought she was wrong, I really believed that I could do this, but I did not know any role models to look at to say, they did it, I can do it. And there was no one to tell me that I could.
I was accepted at Campbell College, Buies Creek, NC. This was a big step for me, my first time away from my family and my support group, and I knew no one at Campbell. I may not have really wanted to, but I knew that this was what I need to do.
My first day at Campbell, I encountered a long flight of steps to my advisor’s office. Campbell had no ramps, no elevators, no accessible parking. I knew I could do those steps but I didn’t think I should have to. I sent a student up to tell her I had a 2:00 appointment and I was down stairs. I figured he would fill in the blanks. He came back down and told me that she said she would be down at 5:00. When she came down at 5, I was waiting. There was no apology, she made it clear she did not think I should be there. If you can’t do the steps this is not where you belong. And when I told her I wanted to major in special Education, Well that was not going to happen! Again, I got the same story. Waist of time and money. No one will ever hire you to work with children! Once again, I did not think she was right, but knew there was nothing I could do about that.
Except for her, Campbell was good to me, they installed their first ramp, I was their poster person, I was allowed to have a car on campus, they gave me my own parking space. I enjoy being in college and I learned a lot about being independent and being out and about! Made great friends. Some I still have. I graduated with a bachelors of science degree in history.
After I graduated from Campbell, I decided to stay in Buies Creek to look for work. I knew that it would be harder to find a job a back home home! I though that I was going to have to volunteer for a job, before I would get hired. I volunteered at The Harnett County Mental Health Dept. in the Adult Day Activity Program. My job was to drive around Harnett County picking up Adults and driving them in to the program, volunteering in the day program and then taking them back home. After a month or so a position became available working as an instructor at the sheltered workshop, teaching self help skills the the adult clients there. That was a good job and I enjoyed working there.
When I decided to move on, I went to vocational rehabilitation to apply for a job as a rehabilitation counselor, I was told they were concerned that I would not be able to have sympathy for my clients. I thought that was odd, and I didn’t think their clients needed their sympathy, they needed their help to go to college, get a job, and live independently. But, once again, there was nothing I could do about that.
I went to a school in Raleigh that had some children with disabilities and some without, going together to the same school. They did not think I would be able to help their children!
Once again I decided I was going to have to volunteer. I went to the United Cerebral Palsy Developmental Day Care Center and talked to the director there. Her name was Leigh Webb. She was very nice and I could tell right away that she had a different attitude. I asked if I could volunteer at her center. She asked me if I could drive a 15 passenger van. I said if it is automatic, I can drive it. Then she said can you start tomorrow? I said yes! She hired me to drive a 15 passenger van all over wake county picking up kids for the center and taking them home in the afternoon. She told me I could volunteer in the center during the day until she had a paying job. Then it was mine. She said my kids need you here, my kids parent need to see you here. So I was hired. I was amazed! I loved that job. She was an amazing lady, she realized that her kids an their parents, needed a role model, an adult with a disability, had been to college, had a job, and living on her on, taking care of herself. I will always be grateful to Leigh Webb, for believing in me.
In 1990, The American’s with Disabilities Act was signed. It prohibited the discrimination and ensured equal opportunities for persons with disabilities in employment. No qualified individual with a disability shall, on basis of disability, be subject to discrimination in employment!
I’m not a leader, so my way of teaching is by living by example, by being out there in everyday life, doing every day things.
When there can time that i knew that I need to transition to a wheel chair, I tried to think of something I could do to make it an easier transition. I had some friends that were doing wheelchair road racing, they said why don’t you try it? I tried it in my everyday chair a few times, that was tough, but very exciting. Being out there with people racing and cheering and encouraging you on was like nothing that I had every been a part of. I did a lot of the Raleigh races but I love traveling to other cities, meeting new people. I had a lot of people come up to talk to me be about someone they knew that had a disability, and asked how they could get involve in wheelchair racing? That was a big part of what it was all about. I got myself a racing wheelchair and did this for about 10 years.
In 2002 I moved back to the farm in Caswell County that I grew up on. I love living out in the country, growing flowers, taking pictures of the wildlife, bird, my pets and sunsets.
In 2010 I started working at the Alliance of Disability Advocates in Raleigh, NC. It is a non- profit organization that works with people with disabilities to help them live as independent life as they can with dignity and pride. My main job is answering the phone. I talk to people every day with all kinds of stories. My job is to be understanding and encouraging and to get them to the people that can best help them with their situation. I’ve been there 6 years, I enjoy the job and working with a great group of people that have the same independent philosophy that I do.
Now that I’m starting to us a power chair more, I’m wondering what can I do to makes this transition easier, I think, the same thing I have always done, get out and about, I want to get out and maybe do some trails to enjoy the nature, takes some pictures. I would like to start an “Out and About” group. If you use a power chair and you never thought the trails were for you, but you would like to give it a try, call me at Alliance of Disability Advocates at 919-833-1117, or email firstname.lastname@example.org. Anyone is welcomed and I’m opened for suggestion! I hope to hear from you!