CYSTINOSIS SOCIETY

For the Able-Bodied Parents and Facilitators in the Room: Tips for Focused and Safe Spaces for those living with Rare Disease

*This article also appears under the title Living with a Disability-An Adult Patient’s Experience-on Patientworthy.*

It is 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 spaces that are dedicated to people living with rare diseases.

To the point, where caregivers and parents do not understand when they speak of their experience with a disease, they are not listening to those who live with the illness but 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 their child lives with on the daily.

Earlier in 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.

The majority of non-disabled people run the disability rights movement. 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

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.

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:

1. 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.

2. 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.

3. 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.

4. 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.

5. 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.

6. 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.

7. 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.

8. 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. .

9. 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.

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

11. 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.

12. 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

[Image Description: Quoted phrase reads, “Contrary to popular belief, our emotions don’t exist inside us as pre-programmed responses waiting to be expressed, but rather they are constructed anew using experiences from our past.” This quote is on a blue background with the Next Generation of Cystinosis logo ( blue, black, green, yellow, and red gender neutral people holding hands in a circle with the words Next Gen Cystinosis beneath them) in the right hand corner as well as a semicolon symbolizing the continuing story of those living with mental illness.]
Source Cited: Ch 2. Finding the Right Words – by David Bjerklie – pg. 10-15

Crip Camp Virtual 2020 Finale

Crip Camp Impact team image description: [Image description: White text over a gradient black background with green triangles reads “Crip Camp Guides. Week 14. Mia Ives-Rublee. Sunday August 23rd. Topic: ‘Building Across Movements: Disability as a Social Justice Issue’. Crip Camp: The Official Virtual Experience.” Next to this is a photo of Mia Ives-Rublee, an Asian American woman with short hair wearing a button-up shirt seated in a push wheelchair. To her left is a Labrador service dog.]

[Image description: White text over a gradient black background with green triangles reads “Crip Camp Guides. Week 14. Leah Lakshmi Piepzna-Samarasinha. Sunday August 23rd. Topic: ‘Building Across Movements: Disability as a Social Justice Issue’. Crip Camp: The Official Virtual Experience.” Next to this is a photo of Leah Lakshmi Piepzna-Samarasinha, a brown-skinned nonbinary femme with curly gray hair and a side buzz.]

The last sessions of Crip Camp Virtual 2020 based off of Netflix’s documentary of the same name (highlighting the origins of the disability justice movement in the United States of America) book marked another virtual conference I attended with young adults with rare disease and disabilities called One Rare, another first of its kind actually hiring speakers with the illnesses and attended by adults with the illnesses only.

I am thinking and feeling quite a lot these days about where I share my story and for what purpose I do, in addition to who it serves to reveal my narrative and if it will really be for those living like me and those who will be like me when they are adults (dare I say—for the children?)

As Julia Bascom and Vilissa Thompson revealed social work to be more expansive than schools, clinics/hospitals, and jails (micro) and also includes systems and advocacy and policy and strategy (macro) we as the largest minority group in the USA (10% diseased/disabled) need to realize what is a “disability” organization and what organizations are actually “disability-led”.

As I reiterate from other posts: are the organizations in the rare/chronic illness you want to support majority-led by people NOT living with the illness (“disability” orgs) or are they majority-led BY people living with the disease? This can be legitimately an issue in some rare spaces as many rare diseases are founded by non-affected parents and several rare diseases do not allow children to grow into adulthood.

However, there are several that have significant portions of adults living with a disease that up until the 21st century didn’t have an adult population. It is to those adults we now want resources and support allocated to in addition to livelihood and support systems. Non-diseased persons do not need an organization to address their needs nor do they need platforms to center their voices as the world already hears them and addresses how they experience life.

The world has never seen disability as competent, intelligent, beautiful, worthy, sexy, and other adjectives typically given to the able-bodied from birth to death. If caregivers/parents need support and aid, an organization most definitely can hold space for this, but not at the expense of overriding the people living with the disease that need representation in education, jobs, marriages, and parenting.

This issue ties hand-in-hand with white-led organizations verses Black/Indigenous/People of Color-led spaces. With all the performative nods to anti-racism, many rare/chronic organizations are remiss in spaces consistently white washing over the disabled lives of people of color in the United States and abroad.

I encourage my readers to check out Imani Barbarin and her work behind the hashtag #AbledsAreWeird and Keah Brown with her work behind her hashtag #DisabledAndCute as well as Alice Wong and her work behind #CriptheVote.

Think about all the different intersections and tools you can use in how you implore people to think about disability such as race, gender, sexuality, class, religion, and education.

As a white disabled female, I come across many stories like mine and want to keep learning about the different privileges and oppression culminating from disability.

Sins Invalid is a Facebook page that looks at the intersections of disability and the performing arts with people of color and queer people centering. Lets keep lifting each other up as humans in this earthly life!

Haven’t seen Crip Camp yet due to no Netflix account? It’s on YouTube now!

Crip Camp Impact team image description: [Image description: A green school bus, with words that read “Nothing About Us Without Us” across its length, over a beige background. Black text over a green background reads “Crip Camp: The Official Virtual Experience Final Session”. Text in red below reads Sunday, August 30 2:00pm-3:45pm PST / 5:00pm-6:45pm EST. Behind the text is a vintage faded photo of camp Jened cabin and pennant flags with red, brown and tan colors.]

Art and Faith: Crip Camp Style

Crip Camp Impact team description: [Image description: White text over a gradient black background with red triangles reads “Crip Camp Guides. Week 12. Antoine Hunter. Sunday August 2nd. Topic: ‘Art Activism: Visual & Performing Arts as Vehicles for Change’. Crip Camp: The Official Virtual Experience.” Next to this is a profile headshot of Mr. Antoine Hunter, a Black Two-Spirit person with shoulder-length dreadlocks and a black beard. He is smiling.]

Crip Camp Impact team description: [Image description: White text over a gradient black background with green triangles reads “Crip Camp Guides. Week 12. Nomy Lamm. Sunday August 2nd. Topic: ‘Art Activism: Visual & Performing Arts as Vehicles for Change’. Crip Camp: The Official Virtual Experience.” Next to this is a headshot of Nomy Lamm, a fat white Jewish femme wearing glasses with light-colored frames, red lipstick with a silver lip-ring, and a red scarf.]

Crip Camp Impact description: [Image description: White text over a gradient black background with green triangles reads “Crip Camp Guides. Week 13. Rabbi Julia Watts Belser. Sunday August 16th. Topic: ‘Our Worth, Our Humanity: Disability Justice as a Spiritual Practice’. Crip Camp: The Official Virtual Experience.” Next to this is a photo of Rabbi Julia Watts Belser, a white woman with glasses wearing a button down patterned shirt, seated in a wheelchair.]

It wasn’t until I was in the middle of my first college degree that I thought about representing my illness in the art I could create. I had been writing about my experience with kidney transplant and cancer since I was in middle school, but thinking in terms of creating any artistic representation of my life with disability and illness hadn’t been in my mind until I was an adult.

I was in bible college and all the female students were being asked to make something to sell at the church’s craft and bake sale. I was a bit stuck as an out- of-state student; I didn’t have access to a friend’s home wherein I could use an oven to bake autumn/winter treats (my first go-to).

A friend of mine who worked at a Walgreens found this really cool idea online where one could use empty pill bottles to make snowmen with black paint and cotton balls. They looked adorable on the computer screen.

Since I had 9-10 empty pill bottles every month, I decided to do this. I had been struggling with my irritable bowel syndrome and migraines so I had a classmate tell the dean of women what my project was going to be for church approval (since I was inhibited in my dorm room the day to report projects). The classmate came back and told me the dean of women wrinkled her nose in response to my project and told her to let me know she needed to see one before they were approved for sale.

This was not the first time a person of faith brought feelings of inferiority into my heart in showing I am a Christian with long-term illness that would not be cured, but it was the first time I felt like I had to further hide that I lived with cystinosis and disability and to keep telling myself I was not like “other disabled” persons.

My snowmen ended up being cute and adorable with the tops of the Walgreens pill bottles as the black painted snow men top hats and the pill bottles with the cotton balls glued all over in their full-fluffiness. The googly-eyes and orange-colored construction paper noses were great faces.

It would be nine more years before I started using characters in performing art to develop my internal thoughts and feelings about being proud to be a disabled female. A female who takes around 40+ pills a day just to exist in her body found reprieve in representing straight males in period dramas. The serious roles I take show me I can exist and be happy in my body as a disabled, Christian female in the outside world.

(P.S. The version I made in 2009ish used cotton balls for the body instead of the white paint on the pill bottle.)

Image Description: Three images in vertical succession. The top has black lettering that reads “Winter Crafts: Upcycle a Pill Bottle into a Snowman!” The word “Snowman!” is in white lettering. A holly leaf is below the text. To the left is the pill bottle snowman with the cap of the pill bottle painted in black and the pill bottle painted in white with buttons and fabric glued on the white body. Sticks are glued on as the arms. The second frame has the empty pill bottle before the supplies are on it. The third frame has the swatch of green fabric, buttons, and stick supplies.

Catching Up On Crip Camp Guides

Crip Camp Impact team description: [Image description: Red, white, blue digital party balloons that read “ADA 30” surround headshots of Natasha Ofili, actress & writer, Jillian Mercado, model & actress, Leah Lakshmi Piepzna-Samarasinha, movement worker, Alice Sheppard, choreographer, Kaitlyn Yang, VFX supervisor, and Storm Smith, film producer. White text over a blue background in the bottom right corner reads “Crip Camp Virtual Celebration 7/26 2:00p PST.”]

Crip Camp Impact team description: [Image description: Red, white, blue digital party balloons that read “ADA 30” surround headshots of Candace Coleman, a Black woman with short black hair smiling at the camera, disability justice activist, and Rashad Robinson, a Black man wearing a black business suit and hat, President of Color of Change. White text over a blue background in the bottom right corner reads “Crip Camp Virtual Celebration 7/26 2:00p PST.”]

Crip Camp Impact team descroption: [Image description: White text over a gradient black background with red triangles reads “Crip Camp Guides. Week 11. Elliott Fukui. Sunday August 2nd. Topic: ‘Education for the People: Best Practices in Facilitation’. Crip Camp: The Official Virtual Experience.” Next to this is a headshot of Elliott Fukui, an Asian American bearded transgender man with short hair wearing a white shell necklace and a black shirt, smiling at the camera.]

There have been 5 weeks of Crip Camp sessions between this post and the last time I wrote for my blog. I wanted to post my answers to questions posed to the virtual campers in celebration of 30 years of the Americans with Disabilities Act along with the graphics of the educators the last 5 weeks because their work is imperative to the disability justice movement.

Alice Wong just released Disability Visability, a collection of narratives written by people living with disability as well as the name of her ongoing project, and Keah Brown’s book The Pretty One has been out for 1 year.

The first question virtual campers were asked for July 26, 2020 was “What do you want to see by ADA 60”?

My answer: I would like to see more accessibility in the education system concerning absence/attendance policy, reporting sick leave, and career centers and degree programs in colleges taking into account SSI/SSDI as serious realities for students during and after school.

Second question: Dreaming big, what would an accessible future look like?

My answer: An accessible future would look like scholarships and funding to assist disabled and diseased people in independent living of autonomy and choice with their own caregivers (not just defaulting to guardians and parents who may be harmful in one or more ways) instead of only resources for furthing education and emergency crises funding. Our abled siblings get to grow up and move out, but accessibility for many disabled and diseased in working class families never have this option as parental medical insurance and/or SSI/SSDI prevent that milestone of moving out.

Third question: How has Crip Camp Virtual affected you?

My answer: Crip Camp has opened up my eyes to a community where needs are validated instead of ridiculed and criticized for their “lack of positivity” that encapsules the rare disease community. Because so many living with rare disease are kids and teens (due to life expectancy), the caregiver and parent narrative refuses to allow adults living rare to lead the discussions. Half of those living with rare diseases today are adults but it’s always marketed info as 50% are children. Most people acknowledge the children suffering and donate money for inspiring family stories, and never see the adult population’s unmet needs. The term disabled must be reclaimed in rare spaces. Thank you Crip Camp for the education.

Fourth question: Share a reflection or something you have learned from Crip Camp Virtual.

My answer: Patrick Cokley’s statement regarding the way disability is spoken of in the USA only surrounding productivity and it’s history to slave ownership got me thinking as to why myself and my peers never hear about things we need like SSI/SSDI, human services, accurate sex edu, and civil rights and liberties (to name a few) and exclusively hear the complaints and trials of caregivers and parents at conferences and townhalls. If an adult with rare disease has a voice, they are living the American dream or a warning story on non-compliance. Another thing about rare disease spaces is majority white people’s access to expensive treatments, potential genetic editing cures, and medical studies. (Granted the complicated history with BIPOC and medical studies is also a factor here).

The United States of America Cystinosis Communities

Crip Camp impact team image description: [Image description: White text over a gradient black background with red triangles reads “Crip Camp Guides. Week 6. Rosemary McDonnell-Horita. Sunday June 28th. Topic: ‘Creating Our Community: Civic Engagement and Your Role in the Movement.’ Crip Camp: The Offical Virtual Experience.” Next to this is a headshot of Rosemary McDonnell-Horita, a Japanese American woman with curled dark hair, wearing a dark cardigan and smiling.]

As the topic in Crip Camp last Sunday addressed creating community, I thought I would revisit the history of the groups in the USA that offer resources to those specifically who caregive and parent children and teens living with cystinosis and those groups addressing cystinosis adults:

1983- Cystinosis Foundation (Jean Hobbs Hotz)

Original foundation that organized the cystinosis community and petitioned approval of cysteamine therapy-Cystagon treatment made available for the first time. First foundation to provide funding in 1985 to Dr. Jerry Schneider’s research on determining carrier status, as well as some of Dr. Doris Trauner’s (Angela Balantyne, Ph.D) neurologic research; also provided grant funding to Dr. Jess Thoene, at a time when funding for rare disease research was drastically cut, Dr. Corinne Antignac at Necker Hospital in Paris.

Sixteen different countries now provide support to newly diagnosed families as well as others at advanced stages in their cystinosis journey: Australia, Belgium, Brazil,

Canada, France, Germany, Ireland, Italy, Mexico, the Netherlands, New Zealand, Turkey, South Africa, Spain, United Kingdom, and Venezuela. cystinosisfoundation.org

1996- Cystinosis Research Network (Colleen and Jack Hammond)

Original focus was on more funding for cystinosis research. The first studies focused on gastrointestinal issues and feeding issues both for children and adults.

Now the CRN is a private, non-profit 501 (c) (3) corporation, all volunteer dedicated to supporting and advancing research, providing family assistance and educating the public and medical communities about cystinosis. Clinton Moore is current President and Christy Greeley is the executive director. cystinosis.org

2003- Cystinosis Research Foundation (Jeff and Nancy Stack)

Day of Hope Annual Family Conference and Natalie’s Wish Fundraising Event

This private fund provider has the mission to finding better treatment and an ultimate cure for cystinosis. First research grants were issued to Dr. Jerry Schneider and Dr. Ranjan Dohil to find a delayed-release form of cysteamine (now known as Procysbi) and to Stephanie Cherqui, PhD for stem cell and gene therapy research. Since 2003 the CRF has issued 151 mulit-year grants CRF funded research studies in 12 countries. CRF researchers have published 67 journal articles.

The CRF sponsors a biennial 2008- CRF International Research Symposium for CRF funded researchers and scientists. In 2018 CRF will host the 6th symposium in Irvine, California. The (CRF sponsored biennial and invitation only) co-chairs are Corinne Antignac, MD, PhD, Julie Ingelfinger, MD and Stephanie Cherqui, PhD.

The CRF, in collaboration with other cystinosis advocacy groups around the world, established the first and only international patient registry. The Cure Cystinosis International Registry (CCIR) is a hub of information for patients, researchers and clinicians.

2017- Future By Design (Aimee Adelmann and Jennifer Loglisci)

CRN has funded an adult only group spearheaded by Jennifer Loglisci and Aimee Adelmann with the hopes for adults living with cystinosis to impact the future of their treatment. This group was disbanded by CRN in October 2018. And CRN announced the formation of Adult Leadership Advisory Board (ALAB) in January of 2019. The goals for ALAB are similar to those of Future By Design with training for leadership skills provided by CRN.

2019- Next Generation of Cystinosis (Mika Covington)

Next Generation of Cystinosis a 501 (c) 4 (pending) volunteer group led by majority cystinosis affected adults without the supervision of caregiver/parent-led organizations to address the continued unmet needs of adult issues in Cystinosis and also to address policy issues affecting rare disease people. Please read about NGC here in their introduction digitally published by their partner Patientworthy.

Disability Community Has Sexual Needs

I have found the disability community to mean home and family to me because my needs will be met if I ask for help. It is not special that I have needs or uplifting in the way others express feeling in their gladness that their needs are not like mine. It’s just me with a lot of other people who have various mild to severe needs different than mine. We learn from each other in describing what it takes to live in our bodies through our days.

We also talk about our other identities besides disability. While health is what brings us together, many intersections cross-over and makes each of our stories unique and special over our disability and disease differences.

When the topic came to sex and disability, my experiences and knowledge with this human act has been shaped by my identity within a strict religious framework. I was taught sexual education by my mother from Catholic textbooks about men and women and what they do to conceive a child after marriage. Even though my family attended a fundamentalist Baptist church, my mother used the Catholic books because the fundamentalist culture didn’t recommend teaching children and teens about reproduction but to prolong the teaching until an opposite-sex couple was engaged to be married.

Religious identity is complicated for me as a disabled female. I still adhere to certain doctrine and theology inside of reformative Christian belief. However, I need sex education that considers my choice to not be sexually active for the purpose of having children, and also the reality that legal marriage is something I may never participate in as someone receiving medical benefits. Its 2020 and upon legal marriage, I would be at risk to loose the benefits I have in receiving healthcare.

I have yet to attend a cystinosis conference that hosts adult meetings with speakers relevant to the spectrum in disabled experience with relationships whether they are sexual and/or emotional and mental. It’s not enough to have a facilitator who is a social worker by trade and a round table discussion of cystinosis adults who aren’t sure if this is a safe space to open up about something so vulnerable and intimate.

Back in 2014, I was doing research for my book addressing church leaders to examine the amount of sex abuse (particularly with women and children) going on in their institutions and to stand for the victims instead of siding with predators. I found those with health disabilities are 10x more likely to be abused than their peers. (If interested in the reality I lived in among strict religious persons who ignored abuse, I have an article available here.)

Trauma-informed facilitators are a necessity in sex discussions as well as speakers who have background in sex therapy and study of human sexuality. Many people with disabilities become parents and live with partners and spouses. Many make other decisions regarding their bodies and partners. Inclusion is important because disabled people have sex or have sexual interests too. And we are often excluded in spaces wherein abled persons get to share first time experiences, things they didn’t know but figured out how to do, and the other side of the spectrum of pain and hurt with people.

[Image Description: First box shows a Black man in a puffy red winter coat scrunching his shoulders and lifting up his right hand in defense of the words in the next box, “abled people acknowledging that disabled people have desires, sex, flings, and relationships”. The box below has the same Black man with the puffy red winter coat. It is open in the picture to show a yellow shirt with a black silhouetted basketball player. His face reflects comfort as he smiles (without teeth) next to the words in the next box, “abled people deeming disabled people worthy of recognition and use them as inspiration porn if they get married/cured” by @zaddyastro.]

Changing the Narrative not Erasing Any Narrative

In consistently checking my own heart and mind on why my feelings are the way they are when certain events happen, I have come across a principle greatly abused in the cystinosis rare community.

I point this out so that the systemic problems can be fixed, relationships can be restored, and people can move forward. In the cystinosis communities, there is a need for changing narrative, not an erasure of the caregiver/parent perspective, but a shift in how topics are discussed.

I want to recognize the other cystinosis adults before me who have spoken to this effect but were also ignored or re-cast in the light of “they just decided they had other things to work on besides an active role in our organization” and other euphemisms for lack of cystinosis adult participation.

I also want to recognize I am pointing this out because of the observations Black people have made for centuries, and are currently making in light of current anti racist education taking place on a global scale in 2020. As well as those of LGBTQIA identies who have also been pointing this principle of changing narrative, not erasure, to the public for decades in this country.

I also want to recognize I am not comparing oppression: being judged by skin color, sexual identity, and disability are three separate kinds of oppression (and certainly not the only kinds of oppression as gender, class, and religion could be discussed as well) and many people have experienced six, three , or one oppression inside themselves. Which leads me to say I am not participating in what some call “the oppression Olympics” to label those who compare “who has it worse” but rather, I am noting the empathy we as a community should have for these different kinds of abuses on each other as humans. Be patient with oneself first, which is what I find hardest of all.

What is this principle that able-bodied people can also learn in their current efforts to be anti racist and less homophobic and transphobic? It is the principle of inclusion: when a community of people allow those most impacted (those with lived experience) to speak first and listen to their stories before speaking about one’s experience with observing the issue (those who have only considered/witnessed things associated with the topic).

I believe the cystinosis community has a problem with allowing cystinosis adult narrative to lead their organizations because for decades most cystinosis persons died as minors (children or teens). Parents had to lead and champion what other able-bodied persons would not. With this no longer the case, their are a plethora of cystinosis adults who are skilled in leading businesses and non-profits.

Now would be the time to not create a cystinosis adult group within a caregiver/parent-led organization, but to support cystinosis adult groups that are majority led by cystinosis adults.

Now would be the time to create boards in your organizations with majority cystinosis adults in the positions to impact change. If the caregiver/parent-led organization is still informing the cystinosis adults and not the other way around, the organization is still controlled by the feelings and thoughts of able-bodied people and not those most impacted.

Crip Camp Impact team image description: [Image description: White text over a gradient black background green triangles reads “Crip Camp Guides Week 4. Heather Watkins. Sunday, June 14th. Topic: ‘We Have ALWAYS Resisted: The History of Disabled Black Activism’. Crip Camp: The Official Virtual Experience.” Right of this is a headshot of Heather Watkins, a light-skinned Black woman with hair in a tight bun smiling widely.]

Let’s get real here. Why are we still not talking about social security income and Medicaid/Medicare and other resources for single-payer adults within rare community? Because the people leading rare community are of a white, middle-high class, hetero married, able-bodied demographic that does not understand the struggle with obtaining rare medication and ongoing hospitalizations threatening their own job status and health to the point of exhaustion or death. They may understand the struggle on the phone between pharmacy, doctor, and insurance but rarely do able-bodied persons connect with cystinosis adults as equals in this fight.

The history in the USA on disability as discussed by Patrick Cokley has typically been from other people’s ideas of another’s work ability. Disability only gets discussed in regard to whether or not you are a good worker. Production. Production. Production.

It is time to let disabled people, including cystinosis adults, discuss their experiences and reality in the workplace, school/college, and home.

And no, not just allowing cystinosis adults with the same narrative as their able-bodied caregivers and parents repeatedly have the floor but giving all cystinosis adults with diversity of thought permission to share their lived experiences.

There is a thing called “tokenism” when one only has a Black person, LGBTQIA person, or disabled person speak for performative reasons: you want the inclusive pat-on-the-back but not the reality of equity in one’s organization.

Anita Cameron said it better regarding offering that one place out of twenty to someone impacted at your organizations meeting place: “You can be at the table and still be on the menu.”

So, as I stated at the beginning of this article, my feelings and thoughts reflected in my heart led me to write here tonight. Why am I struggling with anger and sadness and why am I so exhausted right now in this world?

I am not angry and sad where I hate people in the cystinosis community. I am angry and sad that in spaces that have been marketed as safe for a cystinosis adult and places wherein I have been told by the caregivers and parents themselves on many separate occasions to tell them the truth and “not let parents speak over me”, that those same good people shut down honest, poignant, and vulnerable speech whether subconsciously or with great purpose. Let me repeat: these are the good people who donate money and time.

I promise you that your identity in your caregiver and parent role is not being erased to no longer engage in rare disease life. If a disease you do not have but manage as a job or because your child is a minor takes over your reason for existing to the point you cannot listen to those most impacted, you may want to find out why you are controlling your profession or offspring so damn much.

Seriously. Get help. And don’t put the burden on cystinosis adults. We have bodies with cystinosis that are overwhelmed and stressed enough and we don’t get to express any feelings about that without being checked by others IN PUBLIC for having “attitudes”.

Crip Camp impact team description: Our third and final speaker for today’s session of Crip Camp: The Official Virtual Experience, #CCDisabledBlackActivism, is Anita Cameron! Anita has been a member of ADAPT for over three decades. She currently works as Not Dead Yet’s Director of Minority Outreach.
Photo credit: Sky Yarbrough
Tune in today at 2:00p PST! Register at cripcamp.com

Bodies and Minds and Souls

[Image Description: Rebekah Palmer is standing in front of a red brick appearing building (the bricks are totally plastic material). There are also blue star shaped flowers and red-petaled flowers to her left looking at the photo. She is a white woman with medium length blonde hair. She is wearing a pink stocking cap that has “Love your genes” written across it in white. A purple, triangle-shaped pin is also visible on the hate. She is smiling and crinkling her blue eyes in the sunlight. She wears bifocals and a white t shirt with the Friends of Red Ceder Menomonie Bike Trail logo on the right shoulder of her shirt.]

Along with this photo taken right after the stay-at-home orders in Wisconsin were given (May 26 but I think this state released a bit earlier than that date…more like May 20), I submitted this paragraph for Aware Causes to donate to a fibromyalgia organization:

“I was told by doctors I had fibromyalgia as early as 2014. In 2012, I was clinically diagnosed with general anxiety disorder and ongoing post traumatic stress disorder. I believe that I endure nerve and muscle pain due to how I was repeatedly not validated when I told adults I was sexually abused as a child and when I would report sexual harassment. Some of my nerve and muscle pain is also due to the rare disease cystinosis, but this is not something everyone with cystinosis will live with daily. The purple aware pin also speaks of awareness for domestic abuse/violence. I want to validate that this happens in religious and church families too.
The Love your genes hat I am wearing comes from activist Wheelchair Rapunzel.” @cystinosisociety @wheelchair_rapunzel 💜 #awarecauses

Disabled people and those who live with chronic and rare diseases have lives outside of medical spaces. Medical spaces can come with their own instances of trauma, but able-bodied people need to keep in mind that we are people with whole lives too, and trauma can exist for us in multiple layers and spaces.

I highly recommend the book Don’t Call Me Inspirational by Harilyn Rousso to both caregiver/parent and teenagers/adults! The complexities of who we are as humans on this planet is what makes our stories ours. Taking away humanity with a label instead of describing a part of someone with a label is truly a weird nuance of United States 21st century living.

Meanwhile, I experienced a great session with the mental health guide pictured below as well as the returning India Harville from Crip Camp Virtual (she was pictured on my first blog post about Crip Camp).

[Crip Camp team Image Description: White text over a gradient black background with green triangles reads “Crip Camp Guides Week 3. Yolo Akili Robinson. Black Emotional and Mental Health Collective. Sunday, June 7th. Topic: ‘All the Feels: Incorporating Trauma-Informed Care Strategies into our Work’. Crip Camp: The Official Virtual Experience.” Left of this is a headshot of Yolo Akili Robinson, a Black man with short hair and a high-collared dress shirt.] Check out his organization at Beam.

Spotlight On Goran Kos: Destiny to Fight Rare Disease

Joshua Graham quote that reads “I survived because the fire inside me burned brighter than the fire around me” is written in white with large gray quotes. A red and orange glowing camp fire is to the left of the quote. A dusky view of green hills with a pinkish tone of sunset is the background.

Lysosomal Diseases exist everywhere around the globe. The story I am posting today is written by Goran Kos who emailed his experiences with Adrenolykodystrophy with me:

“Hi everyone, I don’t really know how to start. I think that the best option is to go chronologically.

I was born in 1990, and since my birth I was a sick child. I remember from my childhood that I was sick a lot; I was susceptible to infections of the respiratory tract and my general health was very bad. Nobody knew why, everyone had their share of ideas, but nobody actually knew anything.

In spring 1997, I got ill. I was just 6 years and 6 months old, and my health got bad. I was visiting my grandparents when I got sick. I couldn’t move, couldn’t get up.

Soon they moved me from one ER to another and from there to our capital city. Their first and only idea was that I had an inflamed appendix and their solution was simple – operation.

Thanks to a good old doctor, maybe some better version of our Dr House, I was diagnosed with Addison’s disease. I am sure that I wouldn’t have survived that appendix operation. My body was weak and fragile.

Before my 7th birthday I was skinny, my skin was somewhat “brownish”, my legs had an “O” bent (they were bent outward – genus varus). For Addison’s they gave me my therapy and I was fine. I gained weight, my health was better, appetite strong and I was “normal”.

By my 10th birthday we already knew a possible cause of my sickness. A rare genetic defect caused a bunch of weird little fatty acids to accumulate on my adrenal gland, and caused Addison’s disease. That defect was called Adrenoleukodystrophy and I wasn’t the only one affected in my family.

Since late 1980s my maternal aunt had symptoms of progressive weakness in her legs. She struggled with her disease until her death in 2017 (she died from lung cancer).

From my 7th birthday to my 21st birthday I was “fine”. My health wasn’t perfect, but I functioned more or less like my peers. I went to school, did my share of mischief, and my good share of video games.

In summer of 2011 I got sick; I had what is called acute adrenal crisis. My body was in some sort of shock, my supply of cortisol was low, and soon I ended in a hospital. I got on some antibiotics and after 10 days they let me go home. I was fine.

In summer of 2013 I started showing symptoms of tremor in my legs. I have developed the same phenotype of my illness that my aunt had for almost 30 years. Since then I have had more and more of problems with my legs and my walk: bad balance, weaker legs, and less general strength.

I don’t know what to say to you who read this, maybe that illnesses come and go and some remain part of us for our whole life. We should not stop and surrender.

If we surrender our destiny is taken from us. If we lose control over what we can control, than we have lost our lives: fight, fight until you win or you can’t speak or move anymore. I shall fight until my last day on this Earth.

There is a patriotic song from my country that has a nice line:

‘i kad nam muške uzmete živote,

grobovi naši boriće se s vama!’

‘and when you take our lives

our graves shall fight with you’

Mi Znamo Sudbu”

Goran found an English translation of the whole poem for me to ponder:

We Know Destiny/We Know Our Fate

By Aleksa Santic ( Alexa Shantic)

Serbian Patriotic Song from a Bosnian Serb-English translation

We know our fate and all we’re in for, o!
Yet our hearts in fright will not shiver!
Oxen bow down but men do not quiver,
For God unto men freedom did bestow.

Our strength is a mountain stream,
Nobody shall ever harness its flow!
This people is used to dying in woe-
By virtue of death itself to redeem.

Our way, that of a god-man, we know,
And mighty as a mountain river’s flow,
We shall all tread bold the mud thro’!

Far and beyond, to Golgotha one strives,
But even if you take our lionhearted lives,
The graves of ours shall be fighting you!

A photo of two candles, one slighter higher than the other, with wax dripping down the sides. They are lit with yellow flame.

Crip Camp: the Virtual Experience

A light green auto bus is pictured with the phrase “Nothing About Us Without Us” along the side underlined in red. Red colored peace symbols are located on the back and front of the bus. A crutch and various black hands raised in fists and love fingers reach out of the windows. A wheelchair ramp is visible with the side door wide open. CRIP CAMP is above the photograph in bold, black letters.

What is Crip Camp: the Virtual Experience? First of all, you must know that Crip Camp is a documentary currently on Netflix that highlights a summer camp for disabled people in the 1970s. These campers lives were impacted so much that many of them went on to become leaders in the movement for disability justice.

A note from the film team of Crip Camp states:

“Crip Camp is the story of one group of people and captures one moment in time. There are hundreds, if not thousands, of other equally important stories from the Disability Rights Movement that have not yet received adequate attention. We are committed to using the film’s platform to amplify additional narratives in the disability rights and disability justice communities – with a particular emphasis on stories surrounding people of color and other intersectionally marginalized communities. We stand by the creed of nothing about us, without us. For too long, too many were excluded, and it is time to broaden the number of voices and share the mic.”

[In the top left hand corner, black lettering reads “From Executive Producers President Barack and Michelle Obama followed by gray lettering that reads “A Netflix original documentary” and then in bold black letters “Crip Camp” with gray lettering below that reads “A disability Revolution”. The picture has white buildings with pale green and yellow accents in the background. A forest of tall trees is framing the buildings and a winding road comes forward as do smaller trees and plants. At the forefront of the road is a young Black man holding a guitar over his shoulder with one arm and with the other arm he is pushing a young white man in a wheelchair. Next to the man in the wheelchair is the black lettering and symbol of winner of the sundance festival “Winner audience award: US documentary” . At the bottom right hand corner in white lettering are the words “In select theaters and on March 25” along with the Netflix symbol. At the bottom left hand corner is the rating of R and the Higher Ground production company symbol.]

Second, you need to know that “Nothing About Us Without Us” isn’t a white American people chant. It was coined by South Africans and according to a Crip Camp post on May 13, 2020 on Facebook, “it shows that no decision can be made without full participation of those impacted by the decision”. In the cystinosis community where I have had lived experience the last ten years, everything goes on in the organizations without adults living with cystinosis impacting any decisions. The abled adults and caregivers inform us and not the other way around.

Between May 17-August 30, 2020, the Crip Camp Impact Program has a free online Crip Camp 2020: The Official Virtual Experience. I signed myself up as I am lacking in education surrounding the intersectionality of racism, disability, and other marginalized communities. Please register at cripcamp.com/officialvirtualexperience.

My last post speaks to being active in disability justice, and I have a long way to go in educating myself to bring this not only to the cystinosis community, but in relearning the ways I have learned internalized ableism, racism, sexism, and ways discrimination and trauma have happened to marginalized groups of people like trans, non-binary, and queer people of color. Religion, class, and family of origin and chosen family play into racism and disability as well. Please take the time to read about 5 Disability Justice Activists to Know This Asian Pacific Heritage Month (the month of May).

[Image Description: Crip Camp quote from Haben Girma, whose headshot is photographed in the bottom right corner, that reads: ” I spent time with people who had different disabilities. We learn so much when we can share ideas and experiences from people who are different from us. That’s when I started seeing myself as a Disabled person. Capital “D” with pride. Haben is the first deafblind student to graduate from Harvard law school.]

There were three speakers my first Sunday session on May 17th and I am going to share their photographs and descriptions so my readers can look up their activism.

[Image Description written by Crip Camp team: White text over a gradient black background with red traingles reads “Crip Camp Guides Kick-Off Week! Haben Girma: Disability Rights Lawyer, Author, Speaker. Sunday, May 17th. Topic: ‘Disability Community, Culture & Identity’. Crip Camp: The Official Virtual Experience.” To the right is a headshot of Haben Girma, a Black woman with long black hair & pearl earrings. The Crip Camp logo is in the bottom right corner. Side note: Haben is a White House Champion of Change under President Barack Obama and her book’s title is Haben: The Deafblind Woman Who Conquered Harvard Law. She also has a story in Alice Wong’s book Disability Visibility. Find her on Goodreads.]

[Image Description from Crip Camp team: White text over a gradient black background reads “Crip Guides Kick-Off Week! KR Liu: Head of Brand Accessibility, Brand Studio- Google. Sunday, May 17th. Topic: ‘Disability Community, Culture & Identity’. To the left of this is a headshot of KR Liu, a white woman with short hair, holding her hand up to her chin. The Crip Camp logo is visible in the top left corner. Side note: KR has made it her life’s mission to champion new technology that enhances the way we hear in the world.]

[Image Description from Crip Camp team: White text over a gradient black background reads “Crip Guides Kick-Off Week! Maysoon Zayid: Actress, Comedian, Writer, Advocate. Sunday, May 17th. Topic: ‘Disability Community, Culture & Identity’. To the left of this is a headshot of Maysoon Zayid, a woman of Palestinian descent with long dark hair, wearing a patterned blouse. The Crip Camp logo is visible in the top left corner. Side note: She is the founder of The Muslim Funny Fest. Her Ted Talk “I’ve got 99 problems…palsy is just one” went viral in 2014.]

May 24, 2020 our Crip Camp was cancelled due to the passing of Stacey Park Milbern, a mixed race Korean and white queer disability activist. I did not know her before her passing. She is quoted as saying, “I want to leave a legacy of disabled people knowing we are beautiful because of who we are, not despite it.” Stacey was the co-producer if the Crip Camp impact campaign. She also created the Disability Justice Culture Club.

Yesterday, May 31, 2020 was another round of three speakers. I will post their pictures and image descriptions below:

[Image Description by Crip Camp Team: White text over a gradient black background with seafoam green triangles reads “Crip Camp Guides Week 2. Rabbi Elliot Kukla. Sunday, May 31st. Topic: ‘Internalized Ableism & Intersecting Identities: Disability, Race, Class & Gender’. Crip Camp: The Official Virtual Experience.” To the left of this is a headshot of Rabbi Elliot Kukla, a white, fat, invisibly disabled non-binary person in glasses, wearing a jacket, is smiling in the distance. Side note: He is the first openly transgender rabbi to be ordained by a mainstream movement. He provides spiritual care for those who are dying or bereaved in the Bay Area Jewish Healing Center, and is a disability activist and visual artist.#CripCampVirtual]

[Image Description by Crip Camp Team: White text over a gradient black background with seafoam green triangles reads “Crip Camp Guides Week 2. Dr. Angel Miles. Sunday, May 31st. Topic: ‘Internalized Ableism & Intersecting Identities: Disability, Race, Class & Gender’. Crip Camp: The Official Virtual Experience.” To the left of this is a headshot of Dr. Angel Miles, a Black woman with short twisted hair with glasses and hoop earrings and is seated in a wheelchair. Side note: She is a Home and Community Based Services Policy Analyst at Access Living in Chicago. She explores issues of identity as they relate to intersecting structures of race, class, gender and disability. #CCIntersectingAbleism]

Image Description by Crip Camp Team: White text over a gradient black background with seafoam green triangles reads “Crip Camp Guides Week 2. India Harville. Sunday, May 31st. Topic: ‘Internalized Ableism & Intersecting Identities: Disability, Race, Class & Gender’. Crip Camp: The Official Virtual Experience.” To the left of this is a headshot of India Harville, a Black woman with long hair seated in a push wheelchair and is accompanied by her service animal Nico, a white labrador wearing a service harness. Side note: India is an African American, femme, queer, disabled disability justice educator with 20 plus years of experience in the field of embodiment through her study of massage, somatics and dance.]

Recently, Next Generation of Cystinosis posted this statement on our Facebook page in light of current events that are traumatic and painful for our Black brothers and sisters, and frustrating for white allies:

“Next Generation of Cystinosis stands with Black and Brown people in this time of conflict. As persons living with an ultra-rare disease making us vulnerable to Covid-19, we cannot physically stand with you, but we do stand with you in spirit. We seek to hear you and work with you during this struggle. As people with disabilities we wish to use our voices to lift up yours.

We see the senseless violence toward Black and Brown people and we call for an end to it. We call for justice: justice for George Floyd and all who have died at the hands of police officers.”