Aging Sisters: Health, Communication, and Care

 

Aging Sisters: Health, Communication, and Care

Pamela Block, March 2023

 

I’ve decided to talk about my North American research on care relationships between disabled people and their families with particular focus on the intersectional experiences of two women, one autistic and one with ADHD: my sister Hope, and myself. We are two aging women in our mid-50s 15 months apart in age, we grew up together. I am a disability anthropologist and my most recent coauthored book looked at the relationships between social movements run by parents of disabled people and those led by disabled activists (Carey, Block, Scotch 2020). I have a newer project looking specifically at the care relationships between siblings with the specific goal of disrupting the typical narratives of what a “caregiver burden” disabled people are to their families (Block et al. 2022). Hope shares a house with another disabled woman in Southern Rhode Island. She likes to cook, go out for coffee, do crafts, care for horses, to do shredding, to look at pictures, to watch her TV shows, and to travel.

This is one of a series of essays on the lived experiences I share with my sister Hope, who is autistic, and our mother, Barbara, who spent her life in alliance with my sister in disability and autistic activism (Block, Block, and Kilcup 2008, 2009; Block et al. 2012). The two of them worked together to draw me into activism and collaborative autoethnographic scholarship on autism, communication, and family beginning in 2008, most of these essays available on my blogspot. There is also a film made with the Restorying Autism Project (Block with Block, Lebo and Lebo 2016).

As I wrote the first draft of this presentation in late February 2023 it was in the context of a lit candle, a yahrzeit candle for our mother, who died of cancer 10 years ago. Hope and I now live in different countries. Hope’s services and supports where she lives in the US are far better than she could ever get in Canada, even if she were allowed to immigrate – which would be unlikely due to the eugenics era policies that prevent entry of people considered burdens on the state. Hope prefers to live in Rhode Island and has reminded me that I am not her guardian, and she is happy living her own life in Rhode Island. This has meant that we see each other rarely, and of course the Covid-19 pandemic made visiting even more complicated. I never imagined on moving to Canada in 2019 that there would be a closed border between us.

It is an unhappy coincidence that my sister and I have both, during this period of our mother’s yahrzeit, been drawn into what I will optimistically characterize as mild cancer scares, we both have bodily anomalies, that are almost certainly not cancerous, although no doctor will definitively say that. In any case, both of us have bodily anomalies that require further investigation: my sister an ovarian cyst and me tiny cysts in one of my breasts. My sister is non-speaking, and to many people that means she is incapable of making complex decisions or communicating in complex ways, but we have found this to be untrue. Hope is quite perceptive and intelligent, and she has found many ways to communicate without using spoken speech. She uses her body. She uses personal sign language and facial expressions, and she uses her voice through hums that express her emotional state. She is a master of physical humor and nuanced facial expressions. Though it is not her preferred way of communicating, she can also do some assisted typing. Supported typing is considered problematic because of the perceived potential for manipulation and abuse. However, new technologies such as tracking eye gaze and developments in thought-based communication are starting to advance to a place where these concerns can be addressed more definitively (Jaswal et al. 2020, Willett et al. preprint). Despite all the controversy Hope has occasionally used this method of communication in rather mundane and unproblematic ways for almost 30 years now.

A few weeks ago, I was pulled out of one of my classes repeatedly due to doctors calling me. Her doctor and mine. I had requested to be included in Hope’s appointment with her radiologist/oncologist to discuss Hope’s cyst and coincidentally the breast care center called to reschedule my biopsy (update: when I went to get the biopsy I found out the procedure was cancelled because on looking at previous mammograms they determined there was no need). The doctor for Hope says her cyst is almost certainly not cancerous: “I’ll never say never, but there’s no indication that this is in any way cancerous, but it’s the size of an orange and many women would request that it be removed.” However, she noted that there are risks in surgery and Hope has some medically and neurologically complex issues that make surgery riskier. So, we could just monitor it, but not try to remove it. That is what the doctor seemed to be leaning toward and I was leaning that way as well, but with doubts. The woman who took Hope to the appointment happens coincidentally to also be one of the few people left alive who has been trained to type with Hope but her job is to ferry people to medical appointments and so she has very little time to do this anymore. On this day she had to rush Hope back home after her appointment and did not have a chance to type with her, but she and I chatted over the weekend and we both decided it was very important that Hope have the chance to type about her options and to do it while in a contact with a nurse who could answer all her questions.

So, I immediately went on a quest to make that possible, knowing that there are a lot of barriers, both structural and interpersonal barriers because by insisting that this happen, I stress out her staff, annoy the administration of the agency, and I inconvenience our friend, Linda, who types with Hope. Linda lives in another state and has a husband who has a lot of medical issues, making it hard for her to connect with Hope. In fact, it has been years, our last meeting was pre-pandemic lockdown in February 2020. And I am skimming over the logistics but it did involve a lot of negotiation and stress for a lot of people, but we persevere dand Hope and her staff person drove for an hour and Linda drove an hour and they met halfway between so that the two of them could type together. It turns out that Hope adamantly wanted the cyst removed even if it’s not cancerous because she remembered the cancer growing inside of our mother and the terrible pain that she was in. Hope does not want to die experiencing that kind of pain. The nurse, who attended the meeting by phone started crying and telling her the agency would support her wishes. Hope’s staff person discussed the possibility of trying to arrange for Hope and Linda to meet monthly. But Linda goes home to discover that her husband, who had that morning been perfectly fine, now had some new onset medical issues making that plan difficult.

These are the complex relations of care between two aging sisters facilitated by paid and unpaid caregivers across communication barriers, distance, and time. My understanding of care relationships is influenced by Eva Kittay (1999, 2019), whose daughter has very high support needs and no verbal communication. Kittay developed her theory of care in a context of a philosophical landscape where people like her daughter were compared to animals and so-called “compassionate killing” deemed appropriate. But Kittay talks about the value generated by dependence on others, and the value to a society for caring for dependent individuals. There is value in humans caring for each other, whether it’s mothers for children, sisters for sister, or formal or informal networks for caring for people within a society. I am also very influenced by understandings of care articulated by disability justice scholars and activists (Nishida 2022, Piepzna-Samarasinha 2018, 2022, Wong 2022). Written by and for disabled queer people of color, these are strategies for survival in a world of systemic racism, structural violence, pandemics, and environmental disaster. Using Fine and Glendinning’s (2005) discussion of how humans experience dependence, interdependence and so-called independence, I know that independence -- whether it’s independent communication or independent living -- is an illusion and that all of us experience interdependence and dependence throughout out lives. In the context of this recent experience, I am revaluing and reassessing what exactly dependency means. There is value in being dependent on others, and caring for others who are dependent. Looking at my and my sister’s lives and the webs of relationships that sustain us, I am awed by the complexity of the care relationships that allow us to more than live, but to dream, communicate, connect, to have goals, wishes, and dreams and to sometimes have these honored and fulfilled.

References

Block, P., Block H., Kilcup B. (2008) Autism, Communication and Family. https://pamelablock.blogspot.com/2015/10/autism-communication-and-family.html

Block, P., Block, H., Kilcup B. (2009). Bus Rides and Back Rooms: Autism, Family, Meaningful Occupation & Life Transition. https://pamelablock.blogspot.com/2015/10/autism-communication-and-family.html

Block, P., Shuttleworth, R. Pratt, J., Block, H., Rammler, L. (2012) Disability, Sexuality and Intimacy. IN Politics of Occupation-Centered Practice: Reflections on Occupational Engagement Across Cultures. (Eds. Pollard, N., Sakellariou, D.). Oxford, England: Elsevier Churchill Livingstone.

Block, P. with Block, H., Lebo, S. and Lebo I. (2016) Hope’s Story. https://www.restoryingautism.com/allies-and-obstacles

Block, P., McKinley G. (2022), Care Relationships of Adult Disabled and Nondisabled Siblings, SSHRC Partnership Engage with match from Azrieli Foundation Centre for Caregiving Excellence. CAD$55,000 September 2022-August 2023.

Carey, A., Block, P., and Scotch R. (2020). Allies and Obstacles: Parents of Children with Disabilities and Disability Rights. Philadelphia, PA: Temple University Press.

Jaswal VK, Wayne A, Golino H. Eye-tracking reveals agency in assisted autistic communication. Sci Rep. 2020 May 12;10(1):7882. doi: 10.1038/s41598-020-64553-9. PMID: 32398782; PMCID: PMC7217901.

Fine, M. & Glendinning, C. (2005). Dependence, independence or inter-dependence? Revisiting the concepts of ‘care’ and ‘dependency.’ Ageing & Society 25:601–621 

Kittay, E. F. 1999. Love’s Labor: Essays on Women, Equality, and Dependency. Routledge, New York.

Kittay, E. F. 2019. Learning from My Daughter: The Value and Care of Disabled Minds. Oxford University Press. New York.

Nishida, A. (2022) Just Care. Temple University Press. Philadelphia.

Piepzna-Samarasinha, L. L. (2018). Care Work: Dreaming Disability Justice. Arsenal Pulp Press.

Piepzna-Samarasinha, L. L. (2022). The Future is Disabled. Arsenal Pulp Press.

Willett, F., Kunz, E., Fan, C., Avansino, D., Wilson, G., Choi, E. Y., Kamdar, F., Hochberg, S. D., Shenoy K. V., Henderson, J.M. (preprint) A high-performance speech neuroprosthesis. https://www.biorxiv.org/content/10.1101/2023.01.21.524489v1.full.pdf+html

Wong, A. (2022) Year of the Tiger. Penguin Random House.