In the recent past, Disability Pride Month has haunted the corners of my psyche. Living life as a (mostly) able-bodied person for 45 years, and then thrust into disability has been nothing short of eye opening. The amount of disparity between the able-bodied and the disabled community is vast. On the other side of this deep chasm, I was completely oblivious to the injustice. Just the sheer amount of cost involved in rebuilding your life with items that are accessible. It boggles the mind! No one asks to be disabled, yet when it happens to you, people imply that you are only after hand-outs. Nothing could be further from the truth.

The Shocking Truth About Disabled People

I was on a recent virtual meet up with a few other HOD Heroes. We were enjoying each other’s company, and someone brought up missing work. In a sudden chorus, every person on the call said. “I wish I could go back to work.” This is a far cry from what some folks would have you believe.

We are not an intentional drain on society; indeed, we have much to offer and are not drains on society at all! Just because I can no longer sit through hours long meetings and dissect the minutiae of a financial spreadsheet does not mean that my value to society has disappeared. One could argue that my contribution to charitable pursuits is more valuable than working hard to contribute to someone else’s capitalist dream.

The truth is that almost everyone I know is working hard to maintain or increase the quality of their lives and abilities. Many have discovered new talents that bring them joy and hope, which many have not been discovered had they not become disabled. It’s a beautiful transformation to watch, and I have been honored to have a front row seat! It is far more rewarding that to sit in a cubical farm and earn boat loads of money for someone who doesn’t even know my name.

So Why is Disability Pride Month a Great Thing?

Looking back on previous years, I can see that I didn’t fully accept that disability could happen to me. I see that I have been willing to subject myself all sorts of tests and treatments to try to ‘make me better’. In the meantime, I was inching farther and farther away from accepting that this is my life. It has taken a few years, but I am finally in a good place with accepting this new way of life. Who knew that it is not something that you can just flip a switch and turn on? It is a whole different ballgame when you acquire a neurodegenerative disease that has no treatments and no cures.

Having arrived here by way of a Cavernous Malformation in my brain gave me a false sense of security. The good folks over at the Alliance to Cure Cavernous Malformation have been at this for more than 20 years. They have been working tirelessly towards treatments and cures for the devastating brain disease. So, acquiring HOD was quite a shock. Very little available information, no treatments, not cures, no available surgery, absolutely nothing. We are starting from zero, just like the Alliance had to 23 years ago. We are so lucky to have a great partnership with them to help us along our path.

Truly knowing hopelessness and desperation helps to give a real appreciation for each and every small step forward that HODA makes. Each time a newly diagnosed patient contacts us in that same desperation, I swell with pride knowing that a few short years ago, there was absolutely NOTHING for patients. Now, we have educational materials, events, and even an Ambassador Program! I am so pleased that I have been able to channel my anger and disbelief that something like this could happen to me into something so beautiful and powerful.

What’s Next?

Coming into acceptance and growing past hurt feelings has been just what the doctor ordered for me. It has been a journey of massive growth and healing over these past few years. I can finally say that I am a proud woman, who also is disabled and represents an amazing community of people with a rare neurodegenerative disorder and that I am no longer feeling conflicted about disability.

I have used my mobility aids out in public, and I no longer care if people size me up to judge my level of disability. Simply put, I feel empowered to roll forward and accept my lot in life. I have come to see the natural beauty of this life. Is it hard sometimes? You bet! But I know now that nothing can stop me!

Your turn! How are you feeling about HOD and/or disability this Pride Month? Tell us in the comments!