Guest Blog: Identity and the Organizations That Have Shaped Me
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 fifth 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
If you’re interested in guest blogging, please reach out to us at info@childrenscause.org.
“Individual survivors are extremely unique, and I’m not likely to find anyone ‘just like me’ - no matter how hard I look. ”
On this life-long survivorship journey, I’ve often faced an inner battle regarding identity: who I am; where I belong; whether or not I even “deserve” to be here.
I’ve met many survivors diagnosed as teenagers or later who say things like “cancer changed me” or “I have a whole new perspective on life.” These survivors can “never go back to life as normal,” they say.
It’s a bit different for me. Since I was diagnosed at such a young age (6), I don’t think I’d established a “normal” sense of self (if there is such a thing) by the time I’d gone through surgery and treatment for a brain tumor. I don’t want to simply be known as a survivor but for as long as I can remember – no matter what else I’ve identified as - survivorship has been part of my identity.
Recognizing my survivorship status can be problematic. On the one hand, there are colleagues and strangers who have only known me a short time who instantly turn me into “inspiration porn” the moment they find out about my survivor status. This can be true whether we’ve known each other for 5 minutes or 5 years. On the other hand, I’m sure there are friends and relatives who’ve known me my entire life who may have been impressed by what a strong kid I was, but at a certain point thought I’d milked my survivorship status for all it’s worth and just need to move on with my life. Though people usually have the best of intentions, neither of these takes have been particularly helpful for me in developing a healthy sense of self.
If there is one thing I remember about my early childhood pre-diagnosis, it’s that I was a voracious reader from a young age. If someone had asked me when I was 4 years old what I wanted to be when I grew up, I would have told them I wanted to be an author and illustrator of children’s books. The writing instinct has stuck with me, but I haven’t seen myself as much of an artist in decades. As mentioned in previous posts, I’ve struggled to establish any sort of long-term career - whether that’s more due to my status as a survivor, a millennial, or a combination of both.
As a way to give back and network while working on the career thing, I’ve volunteered in various organizations. The groups I’ve worked with often have a focus on helping others “like me” as I’ve been searching for somewhere I “fit in.”
Throughout high school, I was often the smartest kid in my ‘regular’ classes and felt like the dumbest in the few ‘honors’ classes I took. I didn’t make a lot of close friends, even among the band nerds I spent nearly every weekend with during the fall. But I knew if I’d accepted help from the school counselor or had any special accommodations, I’d be totally ostracized. At least in high school it had been long enough since my treatment that I wasn’t being outright bullied or pitied like I was in elementary school. So I just toughed it out. I made sure my teachers knew I couldn’t hear well and got a spot in the front of the class. (Even that was pretty brave for a teenager wanting to fit in!)
After graduating from traditional high school, I entered what I refer to as “high school with ash trays” - aka community college - and continued to pretend I could get by with little help. However, my hearing was declining, and I was having a harder and harder time pulling it off. The classes were mostly duplicates of classes I’d taken in high school, so I used the same strategy: talk to the teachers and get a seat up front. Eventually this got frustrating, and I talked to the disabilities office at the college to see what they could do to help. They offered me notetakers, which were essentially other students from the class who volunteered to take their own notes on top of carbon copy paper. Although this was not particularly helpful, I made it through the first two years of my college experience just fine.
When I transferred to Chapman University, I utilized the disabilities office from day one. I had a stenographer providing CART (Communication Access Realtime Translation) for each of my classes. It was helpful, but I felt like I stuck out like a sore thumb. CART can be provided remotely but since my classes were mostly upper division English classes, it wasn’t recommended. It was through my CART providers that I met another student towards the end of our senior year.
Though this student had been deaf since birth, we had a lot in common besides our university affiliation. We attended a meeting together of the local Hearing Loss Association of America (HLAA) chapter near the university. The more we got involved with HLAA, the more we found that it was geared toward baby boomers who had lost their hearing due to old age. Some had lost their hearing due to other causes earlier in life, but the fact that they were elderly now meant we had little in common beyond hearing loss. This appeared to be true of many - but not all - chapters. Some even met during the day in the middle of the work week at senior centers, almost as if to say “no young/ working age members welcome.”
To address the issue, my friend and I co-founded a group called Hear YA Now. Hear YA Now is primarily an online community group with a similar mission to HLAA: provide education, advocacy and support for people with hearing loss, directed specifically at young adults ages 18-40. In order to avoid having to establish ourselves as an official non-profit, we worked under the umbrella of HLAA. In order to grow the community, we collaborated with various disability organizations and college disability offices. I’d like to give a shout out to the Los Angeles chapter of HLAA - a very diverse chapter in regard to age - which has been super supportive and like a second family to me.
The more I got involved with the hearing loss community, the more familiar I became with the different factions within it:
There are those who identify as “Deaf” with a capital D, who communicate primarily through American Sign Language (ASL) - whether they speak or not and regardless of their actual level of hearing loss. It’s seen as a cultural identity rather than a medical condition.
Small d “deaf” refers to those with a significant hearing loss verified by an audiologist, whether they use ASL or not.
Then there are “late deafened adults,” which simply means those who lost their hearing after acquiring speech, though often the phrase connotes hearing loss due to old age.
I am technically ‘late deafened’ even though I started losing my hearing in elementary school. I took some classes in ASL in community college, but I am by no means fluent. Many of the younger people I’ve met with hearing loss started losing their hearing before they had acquired speech. They grew up with things like speech therapists and IEPs in school - things I never experienced.
I have identified as a person with hearing loss for quite some time, but after a few years in that world, I decided it was time to move on and keep looking for those I had “more in common with.” I still have many friends in the hearing loss community, but my focus on it has waned over the years as I search for others “like me.”
I made a couple of young adult brain tumor friends through HLAA - one who was diagnosed as a child and another in his early 20s. In my search for groups for young adult cancer survivors, I found many are geared towards those diagnosed as young adults - in their teens or 20’s - rather than as young children. These include groups like Stupid Cancer. Although their slogan was (at the time) “I’m too young for this,” I was in fact diagnosed much younger than those in their target audience. It is awesome that groups like this exist, but they aren’t quite what I had been looking for.
Through my constant personal research, I happened to discover the Children’s Brain Tumor Foundation (CBTF) in my late 20’s. I suppose I hadn’t been familiar with CBTF because they’re based in New York, and I’m located on the West Coast. I attended their Heads Up Conference (HUC) - geared specifically towards young adult survivors of pediatric brain tumors - at Camp Mak-A-Dream in Montana during the summers of 2016 and 2017.
I was excited to go to my first Heads Up Conference in 2016. I imagined I would have lots in common with the other campers. Unfortunately, I felt like I couldn’t relate with many of the other campers, who were at varying levels of cognitive ability and maturity. The experience made me realize just how different individual pediatric brain tumor survivors are. I wasn’t going to find anyone “just like me” at the camp.
However, one of the other campers and I – both first timers - found common ground in our frustrations with the experience. We’d felt a bit ‘babied’ and like other campers weren’t on the same wavelength as us. In addition, I’d had a hard time getting any accommodations for my hearing loss. Thanks to HLAA, I’d become a pretty good self-advocate by that time. With all the other issues campers needed accommodations for, hearing loss must have seemed like small potatoes.
In order to resolve some of these issues, we posted a series of polls on the HUC Facebook group over the next year and formulated small round table discussion groups based on the outcome. The polls allowed us to get to know what topics mattered most to our fellow campers. The small group format allowed a more intimate setting in which myself and others would be able to hear better than in the large group discussions. It was certainly a worthwhile endeavor, and many campers and staff appreciated our efforts.
My attendance at Camp Mak-A-Dream was a wake-up call: Individual survivors are extremely unique, and I’m not likely to find anyone “just like me” - no matter how hard I look.
My experiences going through various systems over the years made me aware that there were probably others in my situation - those who got lost in the bureaucracy of institutions designed to help them - and I started to devise a plan for how to design a career around that.
That plan is still in development, but the more I discover and collaborate with organizations like Children’s Cancer Cause, the closer I’m getting to figuring it out.
Now that I’ve completed my MSW, I’m more knowledgeable about intersectionality and systemic inequalities. The many years I’ve spent as a client of the Department of Rehabilitation (DOR) are what led me to graduate school in search of solutions for those of us who don’t fit into neat little boxes.
In my graduate program I started learning about complications that arise when trying to work individuality into bureaucratic systems. The more I’ve worked as a client of the system, the more I’ve come to realize that it is those who have been through it themselves who are best equipped to serve others in it.
As a social work student, I came to realize that systemic inequalities often prevent that from happening, which has only made me more determined to create change.