Help Kristin and Swann buy an accessible vehicle
Donation protected
Hi, I’m Kristin. I’m a musician and a Traumatic Brain Injury survivor with multiple chronic illnesses. I’m neurodivergent, and I have an extremely rare hearing condition called Hyperacusis. I live in Canada with my partner, Swann (She/Her). She is hard of hearing from otosclerosis and uses hearing aids. I am unable to work due to my disabilities.
What is Hyperacusis?
Hyperacusis is a sound processing disorder that causes extreme pain when I am exposed to normal, everyday sounds. It is considered an environmental disability, and I consider it a brain injury.
There is no proven treatment, very few studies, and extremely limited funding for one small research organization in the US.
The day my brain changed
I was exposed to a very loud sound in my headphones one day. The next day, everything was too loud. That was in 2017. It ended my music career as a bass player. Now, I cannot (among other things) :
Play or listen to music, or go to shows
Go to restaurants, stores or events
Take any trips
Speak out loud
Be exposed to the volume of other people speaking
Use the phone
Vacuum, use kitchen appliances, do dishes
Use the phone
Ride in most vehicles
I need maximum hearing protection when leaving my home, which includes earplugs and noise-cancelling headphones.
Hyperacusis worsens with noise exposure. That means the more sound I am exposed to the worse the sensitivity gets.
What is my life like?
I have had to go to the ER a couple of times, and now unable to speak or understand people underneath my hearing protection, I have been yelled at by medical staff to remove my hearing protection so they can “examine me properly” when I ask them to please type or write to me what they want to say and allow me to type back. Normal everyday interactions with people have become dangerous and traumatic because people refuse to be understanding and would rather hurt me than do something as simple as typing or writing to communicate with me.
Swann takes and makes phone calls for me, because most businesses and medical clinics don’t accommodate and use written communication.
Everything in our home is soundproofed to the hilt. I use plastic cutlery and dishes, have blankets over the windows, the doorbell is removed, and there is felt lining doorjambs and cupboard doors.
We don’t speak, but we text each other our communication. I am trying to get into a sign language program that is subsidized, so that we can use ASL at home, and I can utilize this accessibility tool for communication.
So what happened with my car?
My last car ride in our car was in 2022. The roar of the tires vibrating inside our Honda Civic was too much that day, and caused a significant setback. It is no longer safe to ride in this car. We have had to spend $200 per rental, on vehicle rentals to get me to appointments. But since I have no vehicle to ride in unless it is planned ahead of time, this makes it dangerous for me if I need to get to an ER, or if we need to evacuate, or any other reason that can’t be planned. We need a new car.
Why just any car won’t work
It’s not just a matter of a simple vehicle upgrade.
Anyone without a significant disability can just spend the minimum on any vehicle they want and shop for a good deal. Unfortunately, a lot of cars for the average consumer are inaccessible to me. Most of the mid-level cars out there have little in the way of making the ride quiet. Most people tolerate this, so the companies don’t spend any extra on soundproofing. They do know how to soundproof, though, as is evident in luxury models like the Lincoln Navigator, which we often have to rent.
Not having any options for a quiet affordable vehicle? Things like this puts the financial burden entirely on disabled people to find products that are specially made or adapted. For instance, people who need vehicles that can transport their wheelchairs have to spend upwards of $80,000 in upgrades. This is called the Disabled Tax. And disabled people usually can’t work as much, yet have higher living expenses because these exceptions are everywhere in their lives.
I have done an extensive search and study of cabin noise, and the extra costs of doing our due diligence in soundproofing. On top of that, we have been test-driving dozens of vehicles from every brand that exists.
The only vehicles that I was able to tolerate, are these:
Lincoln Navigator
Ford F-150 (only at slow speeds)
Volkswagen Atlas
The Volkswagen Atlas is the least expensive of these.
We could be spending anywhere between $20,000 and $30,000 after the sale of the Honda. Soundproofing upgrades cost between $1,000 and $3,000, but research is still being done on what the labour would cost, and the cost is still unknown for installing acoustic windows and windshield, new tires, undercoating, new seals, and possibly a softer suspension.
Do I have other expenses?
- My doctor refuses to do home visits, virtual visits, and the office is inaccessible. I don’t get free health care anymore because have to pay for private medical care, due to discrimination in the public health care system. A home visit costs $200 per visit.
- Adaptive equipment like noise-cancelling headphones, earplugs, and communication devices so that I can still communicate with inaccessible businesses and clinics.
- Soundproofing for windows in our home
- Orthoontic and Implant work, which has been estimated at almost $12,000. We are still figuring out what will be covered.
We so appreciate you sharing our Go Fund Me, and if you are employed and financially stable and can donate, we are so grateful to you for doing so!
Please understand that the exact costs can’t possibly be calculated to the exact amount due to many variables. Every effort has been made to give the best possible estimate, and every dollar will be going towards my expenses and living expenses, while I continue to struggle with attaining financial assistance through provincial and federal disability, which I have gone without thus far.
Thank you so much for reading, and here are some other links and articles about me and Swann!
Kristin’s appearance in a fluff piece about noise:
Kristin’s interview on barriers to disability benefits:
Swann’s CBC op-ed on hearing loss in the music industry
https://www.cbc.ca/news/canada/british-columbia/i-m-a-sound-technician-losing-my-hearing-was-devastating-1.5813327
Information about Hyperacusis:
Photo caption: Kristin on a stage with a bass guitar in a past life playing music.
Photo caption: Swann at a sound board mixing live music in a pre-pandemic life.
Co-organizers (2)
Kristin L
Organizer
Calgary, AB
Swann Barrat
Co-organizer