“Born this Way” isn’t just a phrase that applies to gay, lesbian or transgender people.

Not that I have anything against these beautiful humans, but in my case, the words apply to advocacy.

I am a disability advocate. I did not choose to be a disability advocate—it chose me. I was born this way. Born to get infuriated when the pendulum swings in only one direction, when I know for certain it needs to go back and forth fully to be fair to all.

Many people go through life being okay with watching that pendulum swing over to one side only. That’s not me. There is this constant yearning in my soul, a burning desire to help those who cannot help themselves.

And my advocacy helped me tremendously when both my children were born with developmental disabilities. It’s almost as if the universe was preparing me for it all along.

When my oldest child, Colby, was born, everything seemed perfect. I was a happy first-time mommy to a beautiful blonde, blue-eyed boy. Everyone said he looked like the Gerber baby. Then one day my whole world changed. We were moving into our first brand new home. As I was walking around enjoying the newness of it all, Colby collapsed in my arms. We rushed him to the hospital. Little did I know that this would be the first of many trips to the hospital…and the doctor’s office, the specialist’s office, and the therapist’s office.

When I learned my son had a disability, I was also told that I needed to prepare myself. I needed to prepare for the fact that he would never reach those typical milestones that children reach as they grow into adulthood. They said Colby would never go to mainstream school, never graduate, never learn to drive a car, never get a job. And the nevers went on and on.

When we are given this kind of overwhelming news, I believe we have two choices. We can think to ourselves, “Well, this is his lot in life. This is what fate has dealt us. Let’s just accept the situation and make the best of it.” Or we can think, “No one knows what this child is capable of accomplishing in life. So let’s push the envelope a little bit and see what happens.” Because of my advocate way of thinking, I chose the latter.

I have a lot of regrets in my life. I haven’t always made the best decisions. But the one thing I’ve never regretted is how hard I pushed to get Colby the opportunities and services I felt he not only needed, but deserved. This is what an advocate does.

Colby started attending a special needs preschool. Being that he was non-verbal and epileptic, I accompanied him every day. If you’ve ever been in a school classroom, you know teachers will put you to work pretty quickly, and that’s exactly what happened. All of the sudden, I was assisting with special needs children, cleaning out feeding tubes, communicating through sign language, and dealing with daily meltdowns. It opened up a whole new world for me and catapulted me even further into the world of disability advocacy. 

As for Colby, the opportunities I fought so hard for paid off big time. He eventually attended mainstream school. By fifth grade, he no longer needed therapy services. By eighth grade, he received the Presidential Award for Academic Excellence. During his freshman year of high school, he started tutoring seniors in math and science. By his senior year, he graduated in the top 10 percent of his class. Colby is currently attending a university on a full scholarship. When he graduates next year, he will have a Bachelor’s Degree in Electrical Engineering.

I believe that miracles happen every day if you look for them. Colby is one of those miracles.

I know it may sound like a fairy tale. But at the time, it didn’t feel that way. Being a disability advocate is hard. Being a disability advocate can be painful at times, too. Not everyone understands, nor do they care to. After several difficult situations where I wasn’t able to win the war in my fight for equality, I was left feeling hurt. And hearing the whispers from other mothers with their typically-developing babies didn’t help either.

But the most painful part of being a disability advocate and parent of a child with a disability is the loneliness. Often times I felt like I was the only one facing these struggles. I hated that feeling the most. And that’s why I advocate for others. I know the pain of that loneliness and I don’t want anyone to feel that way—ever.

When I was younger, I used to be very in-your-face about my passion for advocacy. But I found that this was not always the most effective method. We typically don’t listen to people we don’t like, and yelling is a good way to not be liked. As I have gotten older, I have gained patience and a healthy respect and understanding for other people’s perspectives. I believe that has helped me be a more effective advocate.

There were times I hated being an advocate, as it seemed like a losing battle. I was tired of being hurt. And I have left the disability advocacy arena altogether at times, swearing I would never go back. But another child would appear and that alone would convince me to return.

After advocating for children and adults for over 10 years now, I know my efforts have helped not only my son, but countless families I have met along the way. I am proud to say that I will continue to advocate and educate others about people with disabilities. I am grateful for the heart of advocacy I was born with.

 

Author: Melinda Campbell-Weber

Image: sakiryildirim/DeviantArt

Editor: Nicole Cameron