About

Surviving, Thriving, and Being Real with Disability

Surviving with disability requires skills, tools, and support.

Thriving with disability requires resilience and spirit.

But being real with disability requires moxie.

Sometimes living with disability is difficult. Sometimes it’s unbearable. Sometimes the only reason we get up in the morning is because someone else is there making it happen.

Then there are other times, when we’re firing on all (or at least most) cylinders. We are accomplishing our goals. We have good family, friends, and others in our lives who support us. Challenges are only challenges, not impenetrable barriers.

But the truth is, most of the time we are somewhere in the middle of these two extremes. And that’s where being real with disability makes all the difference. We don’t spend all of our days curled up in the fetal position planning suicide attempts, nor do we spend them reaching the highest heights. Disability is not designed to be overcome. It is designed to be lived. It is one of the myriad ways we experience life. That’s the reality.

Being real with disability is about this middle.

Being real with disability is about breaking down the stereotypes and myths and tropes.

Being real with disability is about individual truth.

My Experience With Disability

At the age of 10, I was suddenly paralyzed from the neck down due to transverse myelitis (TM).  TM is a neurological disorder caused by inflammation of the spinal cord.  After rehabilitation I regained much of the use of my left arm and hand and some use of my right arm and hand, along with a bit of upper body control.  I also have gastroparesis, a stomach motility disorder, which means I digest food rather slowly.  I have wonderful family, friends, and assorted others who have made my journey all kinds of worth it!  For more information about TM, check out the Transverse Myelitis Association’s website at  http://www.myelitis.org.