Pride in Disabilities

 

July is Disability Pride Month, commemorating the Americans with Disabilities Act (ADA) that was signed into law on July 26, 1990. Until a decade ago, I took this law for granted. Sure, I had heard of it, but I was unfamiliar with its content. Inclusivity and accessibility are something most healthy individuals take for granted until they break a leg or need surgery. Then, the doors to a world of accommodations you pass by daily without consideration open.

Our children are born, and we imagine what their lives will be like. Who will they become? What kind of hobbies will they enjoy? What types of friends will they have? What profession will they gravitate towards? You envision the places they will go, the things they will see and do along life's journey. In the end, none of it matters, only their health and happiness. Except what happens when health is not a part of life's plan? You begin to grieve the dreams you once had. Then you grieve for the dreams your child held dear to their heart. You cry with them and for them.

Throughout the non-linear stages of grief,  I’ve found that acceptance was the most challenging stage to navigate. I know Jayde-Rhiannon is alive today because of sheer determination. An unwillingness on the part of many people to accept what was and is. Maybe that is why acceptance feels like giving up, in a world where giving up is not an option.

In January 2022, I told Jayde’s PCP that we were preparing to file for disability. Her candid response annoyed me, "It's about time." Some part of me consistently held onto the hope that Jayde's quality of life would improve, but denying what I witnessed each passing day served no one, especially Jayde. Everything in me wanted to question our doctor's response. Why had she not said anything before?  Truthfully, I was sick and exhausted. I was battling Long Covid. I did not have much fight in me that particular day. I remember the phrase running through my mind, "Pick and choose your battles." So, instead of speaking up, I did something I'm not very good at—I remained silent. In hindsight, maybe she had seen what we couldn't—we weren't there yet. Jayde was looking to me to guide her, and I realized though I had long ago accepted Jayde was disabled, I feared society would not. But it did not matter what anyone thought or needed, except Jayde.

A few weeks later, I spoke to our attorney, requesting he represent Jayde through what I was sure would be a complex process. He was optimistic, "I could, but you don't need me to do what you can do for free. They'd be crazy to deny her." So, a week later, we began the arduous task of filling out the paperwork. Four months passed before Jayde saw the Social Security Administration doctors. My only shareable opinion of these "medical professionals" is they wouldn't know the truth if it held them down and slapped them in the face. During Jayde's brief appointment, I was angry at how they treated my daughter. Internally, I questioned if the doctors working for the SSA took the Hippocratic oath.

Three months later, Jayde received a thick envelope from the Social Security Administration. As we opened the envelope in big, bold letters, the word DENIED stood out. When I read their reasoning, I was furious. Nothing was accurate. They denied having documentation I knew they had received. They outright lied about her appointment. Our government had failed my daughter. The idea of the physical, mental, and medical trauma Jayde had already endured was compounded by this denial. We both wanted to cry, scream, crawl under the covers, and not come out. However, that would signify I accepted their decision.

Because time was of the essence, we quickly came up for air, regrouped, and began the appeals process. Once again, we filled out the mountain of paperwork, traveling again to see the SSA doctors. A few months later, Jayde received her second denial letter. While I did my best to console my inconsolable child, I was acutely aware of the toll this was taking on her mental health. 

The decision left her doctors in a state of confusion. No one could make sense of the decision or the once again fallacies surrounding Jayde's denial. I called our attorney, "Are you ready to take her case now?" He chuckled, "No, but I know a guy. His name is Dave, and this is all he does." 

July 14, 2023, I called Dave. Immediately, I had a good feeling. He was kind and patient while explaining the entire process in great detail.  After over an hour on the phone with him, Dave told me, "You probably have more knowledge on Jayde's illnesses than most doctors." I briefly allowed his comment to sink in before responding, "I think any mother in my position has more knowledge than the average doctor." I wasn't trying to be arrogant, but experience has taught me both our statements were accurate. He laughed before agreeing, "You are probably right." The following days, I mulled over that conversation, wondering and worrying how a judge with less medical knowledge than the many doctors who have failed Jayde throughout the years could accurately decide her fate.

Months later, during one of our preparation conferences, my gut said to tell Dave about the different things I'd written regarding Jayde's journey. He said, "I want it all. You can even come to my office and use the copier if you want." 

At 8:30 A.M. on June 5, Jayde had her hearing before the judge at the Social Security Administration in Harrisburg. Dr. Rowe, her nurse Amber, her therapist, and her PCP filled out physical and mental evaluation forms on Jayde's behalf. Dr. Rowe and Jayde's therapist additionally wrote letters that blatantly put the SSA to shame. The judge was given 6,400 pages of medical documents and several hundred pages of my chronicle of Jayde's Journey. Only Jayde and her attorney could appear before the judge. Dr. Rowe was on standby to testify. I was Jayde's witness/backup if she could not articulate the proper information. 

Jackson and I sat in the waiting room, impatiently waiting. I rested my head on his shoulder as I told him, "The irony is not lost on me that while her peers were graduating high school and beginning their adult lives, she was in a hospital bed fighting for her life. And now, all her peers are graduating from college, seeking their independence, while Jayde sits in a courtroom being judged on the last twenty years of her life, hoping to gain her own form of independence."

The hearing was only a half hour. Jayde held her own. I was so proud of her. The vocational expert for SSA stated, "Given her limitations and restrictions, there is no job in the US work economy that she is capable of performing." Off the record, the judge told her, "I've read everything you have been through. It sounds horrible." She simply stated, "It is."

Before we left the SSA building, we were informed it could take up to ninety days to hear a response. The only thing to do now was wait and hope everything we gave the judge was enough. As the days passed and we waited, even though the hearing seemed to go in her favor, doubt began creeping in. I thought of the pictures on social media where Jayde looks beautiful and poised, unashamed of the body that consistently fails her. I thought of how, just a few weeks ago, she went to our local carnival and how she felt afterward behind closed doors. 

I know first-hand that many people believe that if you are disabled or sick, you must be confined to your bed or wheelchair. They see you leave your home, and suddenly, your disability has no credibility. If you are having a good day and choose to walk, instantly, there are doubts and whispers. And God forbid if you look good or you are smiling. When you see that individual, what you don't see behind their smile is numerous layers of pain, nausea, insomnia, and fatigue, and not because you have insomnia, vomiting, fainting, hives, dizziness, joints popping out of place, the tray full of medication, more pain, inability to properly speak or think and just for fun, some more pain. You don't see the countless doctor's appointments and treatments. No, on a "good day," you are witnessing a person who wants to function in a society primarily designed for healthy individuals.

This past Wednesday was six weeks since Jayde's hearing. On Thursday, we dropped her and Brett at BWI so they could visit his father in Chicago. The last time they visited Chicago, one of the medical professionals on her team attempted to convince the rest of her team that she no longer needed care simply because she could travel. If you are unfamiliar with the term ableism, the actions I just described are ableism. When a person with a handicap tag or placard walks out of their car you, think to yourself or voice to them, “You don’t look disabled.”  That is ableism. 

I kept looking at the photos of Jayde and Brett at the airport, remembering there was a time she didn’t want to be photographed in her wheelchair. Friday, a thick envelope from the SSA arrived. I was a bundle of nerves opening the envelope. The first words that registered in my brain were “Notice of Decision - Fully Favorable.” While reading those words, tears begin to fill my eyes. However, these tears are not caused by grief or denial—these are tears of joy and acceptance. Jackson stood behind me, wrapping me in his arms as I video called Jayde. Ugh, no answer. I call Brett next. When he answers, “Where is our girl?” “She’s sleeping.” “Wake her up!” Once I know she is coherent, I flip the screen, showing her the page in front of us. They both squeal in excitement. My daughter is physically and legally disabled. Despite how society behaves or thinks, disabilities are nothing to be ashamed of—only included and accepted. 

#jrsjourney #Acceptance #Inclusivity #DisabilityPrideMonth #DisabilityAwareness #POTS #EDS #MCAS #SMAS #NCS #MECFS #Chiari #CCI #TOS #ZebraStrong