Written by Rebekah Palmer

We have passed the 30th anniversary of the Americans with Disabilities Act. The landmark legislation that prohibits discrimination of disabled people in public spaces is rarely acknowledged by society as well as in spaces that are dedicated to people living with rare diseases.

To the point, caregivers and parents do not understand that when they speak of their experience with a disease, they are not listening to those who live with the illness, but rather their own point of view of what it is to be normal. They effectively silence dialogue about life lived in a body dealing with sickness by brushing aside the stories of adults living with the disease that their child lives with daily.

During the first weekend of February 2020 pre COVID precaution in the USA, I was reminded of the reality that my voice as an adult living with cystinosis is meaningless in the communities it should be given the chance to shout.

At this face-to-face meeting, we were all in a hotel conference room: caregivers, grandparents, parents, and then we–the adults and teens with this rare disease, cystinosis. We were physically present with those who make it their business to advocate and extend awareness of our stories affected by it.

The day before, we bore our pain and pleasure in creative work by constructing videos. We worked emotionally and physically hard to make conversations, music, and statements about our lives with cystinosis.

The caregivers, grandparents, and parents had a breakout session the day before as well. Because I am an adult living with the disease in my body, I am in the latter group.

I attended this meeting because I was asked as an older adult living with cystinosis to be present along with one other older adult living with cystinosis to partake in an assistive role of “anchor”. In other words, we were considered experts in life with the disease: so, please come and show up for the teens and younger adults attending.

Because this was a first of its kind meeting for the cystinosis community where adults and teens living with the disease were sharing their vulnerabilities, the team organizing the meeting was not prepared for the emotional storm that hit after our videos were shown.

When I stood up and attempted to convey to the caregivers and family members that this was a time for those with the disease to heal through sharing common experiences, and not to have paternalistic discussions center on caregiving; I was instructed to sit down.

I couldn’t tell you the exact trigger I was exposed to in the midst of many dominant parent voices in the room. When I was again asked to not interrupt a grandparent of a cystinosis teen, I can tell you my body went into survival mode having my original trauma from my past reopened in front of my peers and their families.

I was not present to compare my struggles or my lifestyle with anyone else in the room. I was not there to be treated like I have no say in how my life with cystinosis is.

I sat down with tears flowing down my face as I stared at a man who could continue to then patronize my emotional display as passion, and that his prediction of me was work I had already stated I had accomplished.

I don’t think he realized he was repeatedly reminding me of children I would never have, as well as careers and congregations and platitudes that would never apply to me only because the body I was born into needs life saving treatment to live. I truly believe he was too focused on defending his right to his children, job, and followers in the profession he excelled in because he is an able-bodied male.

Everyone in that room witnessed multiple caregivers talking over us living with cystinosis, not just that one grandfather. They all said they were there to listen to us, but in their actions and speech, kept repeating their perspective over our own and defending their stories as more credible than our own.

We are the experts living with the rare disease in our bodies. We go on dates wondering when to reveal we live with a life-long illness. We go to work wondering how much we should tell a boss about the days off and accommodations we need. We parent and teach children we have and foster, wondering how old they will be when they lose us to a rare disease.

But that didn’t matter as no questions about those aspects of our lives were asked. The people who ran this meeting and other multiple conferences for cystinosis don’t live with the disease and therefore they could not adequately address the turn of ableism allowed to dominate the conversation.

The majority of people who run the disability rights movement are non-disabled. Most of what is considered disabled issues has to do with caregiver perspective and health and nothing to do with the people they serve.

In that room, I was hyperventilating and crying and trying to focus on a silent video game on my phone in front of teens, my peers, and other adults–an educated professional woman only seen as a patient with cystinosis, not a subject matter expert advocate.

I don’t blame any one person there that day for what happened to me in the moment. This is how a body with PTSD responds to its environment. Effectively handling bullies who may not realize they are bullying, and learning how to like people who don’t like me or calling what I was dealing with just passion is far stretched from the truth of the situation that day.

I effectively stopped myself from a rage that would have ended in more devastating results. Trauma isn’t about liking people or handling people. It’s about ceasing to see the person and only seeing the response and behavior.

I don’t do petty. I don’t have time for it. I go to school, volunteer in my communities, and work. I can’t speak for everyone living with cystinosis. I want more adults and teens living with rare diseases to speak up and speak out. They are often afraid to speak out because they see how we’re treated when we do. I don’t blame them for not wanting anything to do with advocacy and awareness in their groups given the ableism of the parents that brought them into this world.

For caregivers, parents, and grandparents:

• If you can afford to, seek individual therapy for you and separate therapy for your child. If there is no compassion and care for you, you can’t extend compassion and care to those you give care for in life. Time off work and lack of health insurance are realities we live with so finding virtual therapy apps may be a better fit for some than seeking therapy in an outside office.

• Respond with patience and kindness to your child, teen, and adult. The issue might not even be their rare disease, but an unconscious resentment for how your child’s disease changed your life.

• If you are always bringing family on vacations that surround conferences for cystinosis, take a family vacation where you can enjoy each other without the centerpiece for travel being your child’s diagnosis.

• Eventually, the shoe will be on the other foot. As the body ages, you too will become disabled. Your child may become your caregiver. Treat them with the same care and compassion you’d want if you were disabled.

• Adults with rare diseases don’t need another parent to give advice or tell them how to live. Consider their own parents and caregivers may have abused them or were abusive by the neglect of their absence.

• Adults living with cystinosis don’t want to rear your kids. Unless we ourselves have chosen to be parents, you are asking single adults for parenting advice. Some of us may have careers as teachers and spend time with the same age group as your kids, but at the end of the day, they are your kids.

• Adults with rare diseases are just like you, and you may have more things in common with them like frustrations with calling doctors, insurance, and pharmacies right along with relationships, sex, working, alone time, and all that goes with living.

• You are here to listen to us. You may care for us, but that does not give you the right to speak over or for us.

• You may have unaddressed trauma with your child’s diagnosis you are carrying. It is not our responsibility to make you feel better about having a sick child or having to be their caregiver.

• Ask questions when something bothers you or intrigues you when they are speaking about their experience and lifestyle.

• Show you are listening to your peers living with rare disease (or your elders, teens and children) by commenting that it sounds hard to deal with daily stresses and rare living.

• Ask how you can better show your care and concern for those living with rare disease and then do those things instead of forgetting an uncomfortable situation happened to a group face-to-face.

“Trauma almost invariably involves not being seen, not being mirrored, and not being taken into account.” -Dr. Bessel van der Kolk the Body Keeps the Score