Community Voices & Reflections for Discussion

Community Voices

Pam Mandler smiling into the camera in front of foliage"I have been dealing with an undiagnosed, invisible, systemic issue for decades that comes and goes, and is slowly getting worse. I finally needed to look into disability benefits a few years ago, but filling out paperwork and having to define my limits was difficult. I am still coming to terms with knowing my limitations due to fatigue and brain fog. My symptoms aren't going to magically disappear, so the best I can hope for is more good days and less disruptive bad days.

I have a lot of feelings about being disabled! In my head I hear all of the negative things, like when I compare myself to my pre-disabled days and feel like I’m falling short. I am working on being kinder to myself and remembering that my body is doing the best it can with what it was given. When I started working in the 90s, there was pride in working all the time and putting in extra hours, but now I understand that I do better when I’m able to take physical and mental breaks.

Being part of the disability community offers an opportunity to connect with others who may experience disability very differently, but still encounter some of the same issues, like having to adjust expectations of oneself or needing to sit out some experiences – while also recognizing that there is still so much that we ARE able to do."

Pam Mandler (she/hers)
Research Fellow

Joy Jarme Smiling and looking to the right“What does disability mean to you? How and why do you identify as part of the disability community?” I wrestle with these questions almost daily and there have never been any clear or uncomplicated answers.

When I was 28, a CT scan revealed a large growth wrapped around my aorta and I was given 3 - 6 months to live. Spoiler: over a decade later, I’m still here, loving life and thriving as a taiko drummer, hula practitioner, and new dog mom. In the years that followed, I’ve been diagnosed with two other forms of cancer, all of which were treated surgically. Because of this experience, I wonder about who gets to be considered a cancer survivor. I haven’t been through chemotherapy or radiation. My medical team recommended a disability parking placard due to my unpredictable energy level and responses to further treatment, testing, and changing medications. At first, I balked. Do I deserve a placard? After all, I am mobile, for the most part, and have no immediately obvious disability.

I’ve also struggled with Generalized Anxiety Disorder (GAD). Getting through the day sometimes requires more spoons than I have available, especially when I am without my Emotional Support Animal (ESA). Should that be enough to qualify me for accommodations? Or am I just an overly empathetic human who needs to “toughen up”? What gives me the right to step up as a member of the disabled community? Whose validation do I need to gain membership? Am I being lazy? Or am I trying too hard? Am I a failure or just too much of a perfectionist?

These questions seem to be as much a part of my disability journey as the physical and mental symptoms. Claiming an identity as a person with disabilities has not always been a clear-cut decision, but naming my challenges has allowed me to seek the support that has greatly benefitted my daily life. I share my experience to encourage those who may be facing similar hurdles to consider seeking information, resources, and options. These years have taught me that admitting the need for help is not a sign of weakness or defeat, but the strength to embark on a new journey."

Joy J. (siya/she/her)
Executive Assistant

Reflections for Discussion

Questions for Independent Reflection

  • Do you think about disability and accessibility often or infrequently? Why?
  • Which elements of this toolkit feel illuminating, challenging, and/or affirming to you? Why do you think that is?
  • Where did your knowledge about disability come from? What messages did you receive about disabled people from your family and culture of origin? How and why have your ideas and beliefs changed over time?
  • What is your personal connection to disability? What role does disability play in your life, or the lives of those close to you? 

Questions for Group Discussion

  • Where have we encountered or benefited from disability advocacy and activism in the UMass community? What are some ways that we could actively support and/or participate in this work?
  • What would it look like for us to move through our days with a lens of disability justice? What practices would we continue in our lives, relationships, and communities? What would we change?
  • What actions would we like to take as a result of our independent and collective reflection? How will we hold ourselves and one another accountable for the goals we set?