Guest Blog: Identity and Survivorship - College and Professional Life
Rachel McCallum is a long-term survivor diagnosed with Anaplastic Astrocytoma of the 4th ventricle of the brain stem in 1993. Her experience as a long-term survivor has encouraged her to become an advocate for others like herself who have struggled with the transition from pediatric patient to independent adulthood.
This is the sixth in a series of guest blog posts by Rachel. Catch up on her earlier posts:
Meet Rachel McCallum / My Search for Adult Survivorship Care / Receiving Survivorship Care During a Global Pandemic / My Day-to-Day Life as a Survivor / Identity and the Organizations That Have Shaped Me
If you’re interested in guest blogging, please reach out to us at info@childrenscause.org.
“Ableism has been a key issue throughout this journey as I’ve struggled with my identity as a ‘disabled person.’”
In my last post, I described some of the issues I’ve had while developing my personal identity as a long-term survivor. I made a brief mention of the Department of Rehabilitation (DOR) - California’s version of Vocational Rehabilitation (VR). In this post I’m going to expand a little on my experience with the organization and how it led me to where I am today.
As I’ve expressed before in this blog series, I’ve found that people simply don’t fit into neat little boxes like bureaucratic institutions would have us do. My experience with DOR has been essential in cementing that concept in my mind.
I spent my high school years trying to ignore the fact that I was “different.” I did not go to the guidance counselor who would have gotten me set up with DOR early on. It wasn’t until I was almost finished with community college that I found out DOR would have paid for the entirety of my first two years of education if I’d only acted sooner. I ended up working full-time at a movie theatre while also a full-time student those first couple years. It would’ve been great if I had only needed to focus on my studies.
My initial impression of VR had been that it was for people in wheelchairs, those who were nonverbal, and veterans with missing limbs. It wasn’t meant for “people like me.” I was eventually convinced otherwise by the disability office at Irvine Valley College (IVC). I set up an appointment and filled out a bunch of paperwork, and DOR paid for my books and supplies for the second two years I spent earning my BA degree.
They would have also paid for my tuition - had I gone to a state school – but because I attended a private university, they only gave me the state rate, which didn’t cover much. After all, I could’ve gotten an English degree anywhere.
Early on in community college, I had taken a course on choosing a major. Based on my love of music and helping people, music therapy became my major of choice during the course. At the time, there were three universities in California with music therapy programs, the closest of which was Chapman University. IVC is well known as one of the best local community colleges for transferring to a four-year university. I worked very closely with a representative from Chapman to ensure I took the right classes to transfer there, initially with the music therapy program in mind.
However, my hearing loss progressed at an alarming rate during my years at community college. As I researched the profession, I learned that music therapists were required to be well versed in several vocal and instrumental forms of music. Early on, that had seemed like a mere challenge. As my hearing got progressively worse – supposedly a result of the radiation I’d received as a child - the less confident I was that I’d be able to meet these requirements. I’d always been told I was an excellent writer (and I hated math) so I decided to aim for an English degree instead.
Since I’d been working to make sure my general education courses would align with Chapman’s requirements and because I was determined to spend just two years at the junior college, I didn’t have time to change course and work towards the Cal State standards. Thus, I ended up attending a private university for an English degree and getting little help from DOR.
I graduated with my Bachelor of Arts degree in English literature from Chapman and assumed I’d be able to get a basic office job through DOR - if not without it - fairly easily. I was able to stay at my student worker job for a couple months after graduation, and I was called back to help with scanning projects over the next couple of years. Although I applied for a few permanent positions at Chapman and Brandman where I was working, it just wasn’t in the cards.
Since I was having a hard time finding “a real job” - something full-time and permanent that would allow me to live independently in Southern California - I decided to find out what DOR could do for me.
Over the course of a decade or so, I went through various programs through DOR. Though I had a counselor at DOR, services were provided by their various vendors. I had hoped that having an individual counselor would provide more individualized services, but counselors clearly have a large case load and little time to spend focusing on any given client.
I was sent to the various DOR vendors one by one. They each went over the same basic resume writing, office etiquette, and mock interview techniques. They each reported back to my DOR counselor saying that I was doing fine and they couldn’t understand why I hadn’t gotten a permanent job by now, despite the excellent percentage of jobs I applied to and got invited to interview for. (Honestly, I think the real reasons can be covered in later blogs on mental health issues and ableism.)
The first vendor I remember being sent to after graduating was Goodwill. I took a sequence of mandatory Goodwill workshops - none of which seemed like a good fit - and got a certificate of completion at the end. The others in the workshops seemed to be more interested in jobs that didn’t require a college degree, like stocking groceries. Either that or they needed more accommodations, like sign language interpreters. At any rate, I didn’t feel like I belonged there.
We moved onto the next vendor, Workability at Santa Ana College. This actually was a better fit. It was at least geared towards those pursuing a college degree. There were the standard resume writing and interviewing skills workshops, and the coordinators there seemed pretty impressed with me. We were all baffled as to why my real life interviews weren’t leading to actual hires.
After Workability didn’t get the desired results, my DOR counselor tried to get me a specialized job developer who works with the deaf and hard of hearing. This was a program established through the Dayle McIntosh Center, which had an office near my home. However, during the course of processing my paperwork for job development services through Dayle McIntosh, they decided that they were no longer going to offer deaf and hard of hearing services at that site. I had already stopped driving as much as possible, and it wasn’t reasonable for me to get to their main site further in Northern Orange County.
While working with DOR to find a “real job,” I volunteered and took temporary, part-time, and seasonal jobs. At one point, I was volunteering for Easter Seals. I met the Director of Development and had hoped I could eventually get a job there. As I applied for position after position with Easter Seals SoCal, the HR team became familiar with me. Alas, I only ever knew the HR people as a candidate and never a new hire.
I had seen Easter Seals as an organization for people “worse off than I was” in terms of disability. I’d never considered that I could be one of their clients. Later on in my journey I would actually have a job developer from Easter Seals. It just so happens that we had been volunteering at the same time and - unlike me - she had landed a job at the organization.
Though I had some very good interviews while working with my Easter Seals job developer, I still hadn’t landed a permanent job anywhere. There is a collaboration between GLAD (the Greater Los Angeles Agency on Deafness) and EDD (the Employment Development Department). The EDD has specific counselors who know ASL and are trained to work with Deaf, deaf and hard of hearing consumers. For a time I had a job developer in this program, though it didn’t quite fit my needs either.
Over the next few years (2015-2017), I worked with another couple of agencies through DOR. I never got an official job developer through the Dayle McIntosh Center (DMC). However, I networked to gain the executive director as a mentor in grant writing. At this point I’d taken a few courses and been networking elsewhere, though to this day I still have little experience actually applying for grants. From mid-2016 on I was volunteering for Meals on Wheels through Age Well Senior Services near my parents’ home. I have continued to volunteer off and on with Age Well ever since and gained a “per diem” position with very few hours in late 2020.
During the second half of 2017, I moved in with my aunt and uncle in Long Beach to act as a caregiver for my ailing aunt. It was during this time that I began seriously thinking about grad school for social work. I had considered grad school previously, but I was apprehensive due to the debt I’d accrued during undergrad and the trouble I’d had obtaining a fulltime permanent job over the past decade. Ultimately, I decided to go for the MSW. I applied to Cal State Long Beach and USC. Discussions with my DOR counselor were fruitless in gaining any sort of support for my graduate degree from the department. In spite of this, I got into USC and began in the fall of 2018, graduating with my MSW amidst a global pandemic.
My decision to attend grad school - and specifically to get a degree in social work - was heavily influenced by my experiences with DOR and other agencies. Ableism has been a key issue throughout this journey as I’ve struggled with my identity as a “disabled person.”
My next blog will explore ableism within the organizations I’ve encountered over the years, from medical institutions to universities and non-profit organizations. Subscribe to the Children’s Cancer Cause blog to receive an email alert when there is a new post in this space.