Emily is without the correct working wheelchair they need which is the Omeo at 16,000 to get around their grandmothers gravel property and mode of transportation to move the 175 lb electric chair around as current caregivers will not be able to transport the heavy wheelchair without a ramp accessible car nor is their public transit on the mountain where they plan to move in with their grandmother as their Los Angeles apartment is neither accessible nor sustainable. A van accessible vehicle is 80,000 dollars after tax. We do not want to buy a used one and worry about the costs of replacing main parts of the vehicle. Because they are a paraplegic Kaiser does not cover the cost of the electric wheelchair despite the damage done to a fragile spine from using a manual chair. On top of these costs Emily has been buckling under the weight of substantial medical debt from nearly 21 surgeries as well as lack of treatment for their pain disease CRPS. They previously relied on lifting their own chair into their car, which led them to need 3 more spine surgeries 2 years ago on top of the 4 they already have had. In short, without a new chair and vehicle to accommodate it, Emily will have no capacity to leave their house without considerable help. Think about what this means in terms of them being able to access the medical treatments they need in order to treat their CRPS, as well as apply themselves to their future goals in advocacy and art.
Due to the limits of SSI their paraplegia and the often debilitating nature of their CRPS, Emily’s avenues for income are extremely limited. They rely on their IHSS caregiving and health insurance but both would be lost if proven to be capable of “gainful activity”, meaning they are unable to pursue working for a livable income as they could lose a necessary safety net in case of the semi-inevitability that their CRPS interferes with their ability to work. When caregivers cant work or their aren't enough hours they increasingly have to rely upon friends' availability for the things they physically cannot do, get to appointments, go to physical therapy, pick up medication and food.
Emily recently had to change insurance providers. Under this new coverage, Emily has not been able to receive the same medical treatment for their CRPS. After months of struggling to receive proper medical treatment, their provider refused to cover the cost of a replacement wheelchair. Emily’s doctors have deemed it medically necessary that they use a specific wheelchair and a wheelchair accessible vehicle so as not to cause further complications from past spine surgeries.
We are hoping to raise funds so Emily can have access to an accessible van with a ramp and hand pedals and a usable wheelchair. Without these items, Emily will be unable to live a mobile life, without further health complications that you and I take for granted.
The best option for an electric chair that can fit in Emily’s Bathroom costs around $17,000. This chair requires a wheelchair accessible van, which will cost around $80,000 after tax. Emily also requires $10,000 for CRPS treatment in the immediate future as well as $6,000 to account for long-term caregiving. The rest of the fund will go towards home modifications that enable Emily to move freely throughout their house.
It may seem infuriating or confusing that basic necessities like these cost so much, but this is our opportunity to lend support to someone who deserves the dignity of autonomy, does so much for their immediate community, and for a larger disabled community as a fierce and unyielding activist. We ask that any of you who see this offer whatever support you can, whether via donation or broadening the fundraisers reach by sharing on social media.
Helping Emily reach their goal will widen the impact of a brilliant, caring and dedicated advocate for marginalized people. This is our chance to make a difference for Emily and show up for them like they show up for so many others. Thank you kindly for taking the time to read this as we work to get Emily the tools they need to move through the world as only they can.
This is a statement from one of Emily's friends--
Ever since I have known Emily, I have watched them move through obstacle after obstacle with dignity and grace, all while lending themselves to others, caring for and sticking up for other marginalized bodies. All of their life’s work is focused on centering and lifting up the needs of people with disabilities, be it through their art that illustrates the daily inaccessibility they face, their podcast which breaks down and educates around issues of health justice and disability or their modeling which they use as a platform to express a call to action around issues of accessibility and systemic injustice. To engage further with Emily’s work, listen to their podcast here or check out a recent profile from Vogue
Emily’s work on behalf of others struggling with institutional oppression does not end with their personal work. On more than one occasion they have been diligently working on writing grants for others who are sick. They use various means to advocate for health care policy so others won’t have to deal with the same structural issues they have faced. I often hear them coaching people through getting everything from insurance coverage, to getting therapy. They often give away their time and work for free in their attempts to inform able bodied people around issues of access, healthcare and disability. All of this while dealing with constant physical pain that is sometimes completely debilitating in of itself due to their CRPS. But they do not all the illnesses, pain or paraplegia keep them from living life to its fullest, pursuing their goals and advocating for other chronically ill and disabled people.
Throughout all of this struggle I’ve witnessed them in, their generosity and warmth for the benefit of others has remained constant. When I temporarily threw out my back, they offered to bring me soup and take care of me. Emily is continuously checking in on me and my welfare. They are caring for others’ pets, offering their home to guests, feeding others, sharing their knowledge of medicine and care to benefit and help their friends when they experience minor, helping people get government aid and showing up to friends’ shows to offer support even when Even if this requires them to risk illness, struggle with transportation access and take time out of their extremely busy day that typically sees them spend hours advocating for their own basic rights
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