Mental illness as a mobility issue

It was a typical New England January day in 2013 & I was feeling nervous as I was being given a new patient orientation for the partial hospital program at the OCD Institute at McLean Hospital. As the counselor finished giving me a tour of the building I’d spend the next several weeks getting treated for severe OCD at, she pulled out a stopwatch and directed me to walk the length of a hallway as she timed me. If you’re perplexed by this, don’t worry. So was I. The counselor explained that they needed to make sure I’d be able to leave the building in a timely manner if there was a fire alarm.

Most people’s exposure to OCD is through stereotypes in the media about cleaning obsessions or personality traits such as perfectionism presented in a humorous way. Those of us who live with OCD know it can be a debilitating disorder with a wide array of symptoms and obsession themes. That morning what the counselor was concerned about was whether any counting, checking or avoidance behaviors impacted the pace at which I was able to move and thus my ability to save myself in an emergency.

Yet when emergency response, transportation and other public services consider people with mobility access needs in their design, psychiatric disabilities rarely get any attention. As someone who has mobility needs due to both my physical disabilities and my mental illnesses, I argue that public services that cater to individuals with mobility access needs must include those of us whose mobility is impacted by our mental illnesses in their programs.

There is one area where there is more significant awareness around this issue which is a phobia of flying. Several airports in the country offer programs to help people with a fear of flying become comfortable taking a plane trip. However when it comes to everyday travel on public transit, our accessible transportation initiatives are not designed for mentally ill folks.

A few years ago, I had another psychiatric health flare and needed to travel to a hospital 20 miles away every day for several months to get treatment. This quickly became an issue as my symptoms meant I couldn’t drive myself and taking crowded public transit with its lack of personal space and sometimes odd smells often caused panic attacks that lasted the rest of the day. Frequently I ended up taking a very expensive taxi trip that ensured that I would at least get to the hospital without a huge spike in my anxiety. During this time, I went to a disability resource fair where a booth about the local paratransit service caught my eye. The staff there told me that a psychiatric disability might make me eligible for paratransit service and that I should try applying. A few months later I had an appointment for an evaluation to determine my eligibility for the service. I presented documentation from my psychiatrist about my need for the service. But to my surprise the entire evaluation consisted of checking my walking abilities in a completely different environment to the OCD triggers I encountered on regular transit.

Around this time I had also developed physical health issues requiring the use of a cane so I was partially approved for paratransit service if the bus or train stop was far from my location. Unfortunately this was not at all useful since I have nearby transit stops which I was unable to access because of issues like the elevator being smelly triggering my OCD. I filed an appeal & just around the start of the pandemic I was given an appointment with a psychologist to evaluate my case, a development which made me feel hopeful but also nervous as this was the only appeal allowed.

It went badly from the start. I was thrown off guard by the psychologist asking irrelevant questions and making comments about my immigration history and ethnic background. I proceeded to explain that I really needed the service to be able to attend medical appointments and that I could not afford to continue taking cabs. I was asked what I did if I started a trip but then encountered an OCD trigger. I explained that I either got off the bus or train and went home or I completed the trip if it was really important and endured panic attacks the rest of the day. I later found that the psychologist considered this as evidence of problem solving on my part and used it to not only deny extending my paratransit to full eligibility but revoked even partial access. In hindsight, the outcome was obvious from her saying during the evaluation that I should feel safe on regular transit now since it was being cleaned more thoroughly because of the pandemic. The denial notice also reasoned that since paratransit was still a shared service it would not meet my needs, as if sharing a standing room only train ride with hundreds of people with no personal space was comparable to sharing a van with a couple of other people each having our own seats.

It became clear from the denial notice that the psychologist I was assigned to did not understand OCD at all or it’s impact on mobility needs. This is not surprising in general as OCD is a niche treatment area that most psychologists do not have a specific expertise in and in fact many common therapies used to treat other anxiety disorders are contraindicated for OCD.

Since this series of events happened, I’ve connected with other patients who have mobility access needs on public transit due to psychiatric disabilities such as PTSD & agoraphobia. Many such patients could benefit from paratransit but the gatekeeping and sanism built into our public services means there are significant barriers to getting access. Indeed the application processes themselves can be anxiety and trauma triggers. Several people have, for example, encouraged me to file a complaint about my experience but it’s taken me two years to even talk about the issue in detail because of the gaslighting response of the psychologist being a trauma trigger.

These days, I am almost completely housebound due to lack of safe, affordable transit. After I was denied access to paratransit in 2020, I found a medical transport service to be able to go to medical appointments safely as someone at high risk of severe illness from COVID. Each ride through this service costs around $200-300. This means I can’t justify its use for anything other than unavoidable medical appointments, especially since I was unemployed for half of 2020 and have been on disability leave for almost all of 2022 thus limiting my finances further. During the pandemic, as someone who lives alone, this has increased my isolation even more when I’m not even able to access safe, solo outdoor activities because I can’t afford an accessible ride.

I’m currently working with a new therapist on challenging disability discrimination in my life. One of my upcoming projects will be to finally file a complaint about being denied access to safe transit because of the ignorance and neglect around the mobility needs of mentally ill people.

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