Medical Care for Disabled Artist and Advocate

My name is Celeste Tooth (they/them) and I am a Disabled non-binary lesbian attending college at Maryland Institute College of Art. I am opening a fundraiser this Rare Disease Awareness month with the aim of crowdfunding for pieces I need for my wheelchair.

On February fourth I met with my neurosurgeon who decided that the best course of action would be to perform a fourth neurosurgery for my lipomyelomeningocele, spina bifida, and tethered cord. This surgery is different and more invasive that my previous surgeries– and it is a new and experimental procedure that is just beginning to be done at a few select hospitals in the country. A team of my neurosurgeon, a plastic surgeon, and orthopedic surgeon will essentially cut my spinal column in two areas, remove my t-12 ribs, remove 80-100% of my t-12 vertebrae, and fuse around it with a metal cage and a selection of screws. The current plan is to operate in the first or third week of March 2024. This is a massive surgery that will require an extensive recovery time even if everything goes to exactly plan.

I desperately need to upgrade pieces of my wheelchair in preparation for recovery from this neurosurgery as my needs have changed– especially considering the inaccessibility of the area I live in (i.e. cobble stones, light rail train tracks, broken down sidewalk, etc). Another compounding factor is that I was having an increasingly difficult time navigating my non ADA compliant university as I dealt with neuro progression. I had really hoped to complete the rest of this semester (10 more weeks) to graduate prior to needing another surgery, but this became increasingly unmanageable between my worsening neuro state necessitating surgery and the fact that my campus is so inaccessible. I plan to return to school next semester to complete the two classes I need to graduate. I need proper equipment to aid me in navigating this campus as I have already been injured in the past. If my initial goal is met, the money will go towards my ongoing care including towards this fourth neurosurgery to shorten my spinal column.

My healthcare is excessively expensive. I take dozens of medications a day and require invasive inpatient care frequently. Even just in the time since committing to Maryland Institute College of Art, I have: had a second major neurosurgery for spina bifida/lipomyelomeningocele/tethered cord, had a lacunar stroke, had pneumonia (for the sixth time)/pulmonary edema, went into anaphylaxis, had a third major neurosurgery for spina bifida/lipomyelomeningocele/tethered cord, developed atypical dress syndrome or severe allergic reaction with multi system involvement, developed severe sepsis from kidney abscesses, dozens of other “smaller” issues, and now I am headed towards an experimental spinal column shortening neurosurgery.

My father is dealing with incurable stage 4 cancer at the moment and my family is essentially living off his pension. I am very fortunate that they help me so much with accommodations related to my disability as well as help me with my healthcare– but at this point my healthcare in the US is already costing a truly distressing amount of money. I have worked since my freshman year in college– including through all the summers. I currently work two minimum wage jobs through my school so unfortunately a leave of absence means losing both of my jobs– and I won’t be able to work for a while after surgery. So I do have some savings fortunately, but I can’t dissolve my safety net at a time like this in order to purchase this equipment.

For reference: I am diagnosed with: Lipomyelomeningocele (Spina Bifida) with (Re) Tethered Spinal Cord (x4), Full Spine Scoliosis and Thoracolumbar Degenerative Disk Disease, Pseudomeningocele, Spinal Stenosis, S1 Tarlov Cyst, Bilateral Amblyopia with Astigmatism and Anisometropia, ADHD, Dyslexia+Dyspraxia+Dysgraphia, Ehlers Danlos Syndrome, Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, Hypertension Stage 2, Autonomic Mini Storms, Mast Cell Activation Syndrome, Asthma, Thyroid issues, Gilbert-Meulengracht's Syndrome, Gastroparesis+LPR+Colon Dysmotility, Delayed Sleep Phase Disorder, Complement C1q Deficiency, an immunodeficiency likely related to variants of unknown significance, recurring pneumonia, and other associated comorbidities. I also have issues from a Lacunar Stroke (December of 2019), sepsis (may 2023), and six bouts of substantial pneumonia.

I put my heart into community service work– a significant portion of which I do for free. Examples include: obtaining 4000+ N95/KN95/KF94 masks and 140 covid tests to distro to people at my university over the pandemic years (aided in part by Covid Safe Campus), working on creaeting two art exhibitions celebrating the Disabled community at MICA, working as a France Merrick Fellow at Make Studio to develop an exhibition celebrating artists in the greater Baltimore area as well as running workshops, meeting with our state representatives throughout my fellowship with Transform Mid-Atlantic to talk about access issues, aiding other students in obtaining accommodations at my school via my work with the Student Voice Association, successfully assisting in advocating for accessibility changes at my school (an elevator placed in the Spear residence hall, accessibility training for the dining staff, the prolonging of mask mandates during the first year back to school, advocating for shuttles to be used for disabled student access needs, etc) as well as general student advocacy (ie helping run town halls to demand transparency from admin), working with the National Museum of Art to adjust their accessibility policies, etc. Supporting my ability to get proper equipment will allow me to continue to work in ways that benefit my community.

My parents are middle-class and I have a lot of financial privilege in how much they help me with my medical care. However, there are certain aspects of my care and safety that could be greatly improved by access to financial assistance from outside sources. This is especially true in regards to acquiring upgrades to my current wheelchair situation– and the fact that my upcoming neurosurgery and factors around it (ie plane rides, hotel, ubers, etc. for my family members) are going to cost an atrocious amount of money.

I firmly believe that disabled people deserve access to tools they need to thrive and have the best quality of life possible.

Itemized Costs (explanations below):

Items that any donations will be used for:

-$938 Roho Agility Carbon Back Support

-$69.99 Roho Planar Solid Seat Insert

-$446 Roho Hybrid Select Wheelchair Cushion

-$3403.34 Loop Wheels Urban regular spring rate pre-fitted with tires and gecko rims

-$1540.01 estimated self-pay for upgrades to my new chair

-$6675 SmartDrive

-$649 FreeWheel

-$240 Summit Breaks

-$100 total for shipping

-$250 ReTyre Tire covers for rain and snow

=$14,311.34

also recommended to me:

-$2999 Rio Mobility Firefly 2.5

=$17310.34

Other potential financial stressors include copays related to this highly probable fourth neurosurgery, plane tickets/hotel room for a family member to come help me, and the cost of ubers to my appointments. This is all compounded by the fact that I won’t be able to work post-surgery regardless of when it occurs. I will always update this GoFundMe to explain exactly where the money is going to. Another major factor is that this experimental neurosurgery could result in a need for various other expensive services and equipment.

Explanations for equipment:

Since my lipomyelomeningocele/tethered cord recently progressed again, I am in need of a supportive backrest instead of the standard tension adjustable strap backrest set up I currently have. I am also in need of a better cushion and insert. My insurance won’t cover any of these things since I have a new chair ordered– but I need these items now, not in five months or so when the chair arrives. Since my new wheelchair will be a slightly different size, I can’t simply request the backrest and cushion now since they wouldn’t fit my current chair. I have seemingly exhausted my options of local organizations to acquire these items.

I have also been recommended urban loop wheels to help me navigate my university campus that is not ADA-compliant as well as the inaccessibility of the city. To access my campus I have to navigate dilapidated cobblestone hills, train tracks, curbs even indoors, etc. This is both intensely painful and potentially damaging to me as someone with a spinal cord injury. Loop wheels have been shown to improve multi-symptoms in sci patients as well as reduce vibration to aid in the prevention of long term issues. Loop Wheels are not covered by my insurance. More Info: https://loopwheels.com/wp-content/uploads/2018/09/Clinical_Indications_Web.pdf

My new upcoming wheelchair has been upgraded in a selection of ways in order to help me navigate the aforementioned issues with my university’s campus as well as the city environment I live in (ie I have to cross train tracks daily while going uphill). Unfortunately my insurance does not cover many of these upgrades and my estimated self-pay is $1540.01.

Summit breaks help wheelchair users not roll backwards while pushing uphill and ReTyre covers aid wheelchair users in rain/snow. Insurance doesn’t cover either of these things.

I have also been recommended a smart drive in order to help me climb the hilly area around my home and campus. A smart drive would also help protect my shoulders which have already suffered issues due to ehlers danlos syndrome. A Rio Mobility Firefly was also recommended to me on the basis of giving me more freedom to leave the area around my home. I don’t have a car– and ubers are both prohibitively expensive to regularly use and I have had numerous terrible experiences with drivers who have been wildly ableist to me. A smart drive may eventually be covered for me by insurance but likely not for well over a year… and I really need one now.

Happy Rare Disease Month!

You can also venmo me: @toothtooth. Ask for paypal, zelle, or wise.

You can connect with me on instagram @littlepileofteeth

More about me as a person:

Celeste Tooth (they/them) is a non-binary lesbian interdisciplinary artist and activist whose work centers on their identity as a disabled person and the extended disability community. They have exhibited in numerous exhibitions throughout the continental US. Upcoming shows include the 2024 VSA Emerging Artists exhibition at the Kennedy Center, Opulent Mobility, and their first solo show The Body Out of Motion which opens in April 2024. Recent publications include Beloved Zine and Look Deeper Zine. Their work in Drawn Poorly Zine is archived at the Wellcome Collection Museum in London.

Tooth is also engaged in disability justice advocacy work in various contexts including being selected as a France-Merrick Fellow working with artists at Make Studio Baltimore, a Transform Mid-Atlantic Civic Fellow, a Covid Safe Campus Ambassador, and a Diversity Coordinator at Maryland Institute College of Art’s Office of Culture and Identity. They are currently working as head curator on their 3rd exhibition centering Disabled artists in Baltimore city. Their commentary on ableism has been featured in magazines such as Hyperallergic, Xtra Magazine, and The Art Newspaper.

They attend Maryland Institute College of Art on numerous scholarships. In 2024 they will graduate with a BFA in Interdisciplinary Sculpture with a humanistic studies minor in Gender Studies and an arts minor in Illustration. Their current art practice is supported by a generous grant from the Kennedy Center.