Abstract
What can a parking pad at the front of a house and agent orange, a defoliant used by the US military in its “Operation Ranch Hand” during the war in the Vietnam, possibly have in common? How unsafe does everything need to become to justify action? These are just a few of the questions at the centre of the stories I share in this piece; a piece that traces my/our experience trying to “get” something from our city to make access happen, and another story from decades earlier centred on restorative justice and the toxic chemical (dioxin) legacy of the American war in Vietnam.
The application form for a front yard parking pad does not have a check box for ‘disability’ or ‘accessibility’ … of course it doesn’t, so what next? How do I make visible our needs, as a family with a disabled child, within an ableist, bureaucratic, technocratic city services process, that does not ‘see’ us, a family that needs to remake their front yard to make it work for us and our daughter, to make access possible.
If you were to visit our street in Toronto, Canada, what you would see at most homes, is a front yard parking pad. In our case, however, this parking pad process begins with a battle pitting us against the urban forest. A tree sits on the city side of the front yard, planted by a previous occupant. The tree’s contribution to the urban forest is negligible, it is not one of the beautifully massive ageing oaks or elms tasked with casting shade across our neighbourhood in the heat of summer; it is an ageing multi-trunk birch tree … a professional arborist has said it doesn’t have much time left.
Because of said tree, we begin a political project to organize support for our plan – noting that we can build around the tree. I begin to pursue our case with our local city counselor. I am optimistic; I have studied the politics of our municipal (city) to federal representatives closely, our counselor is left leaning, you might even say progressive. Surely our need to build around the tree to support our very real accessibility requirements will be unquestionably understood.
Alas, it is a set-up, as it sometimes is, but these are still early days in our life with spinal muscular atrophy (SMA) and ableism. At the time, I had yet to be conditioned to expect to be disappointed by institutional and inter-personal reactions and responses to our life and needs. Since then, I have come to expect the worst when we ‘ask’ for something. Many others usually have that ‘something’ we are after but have worked differently, or not at all, to get it. Our work is different, the stakes are higher, and the physical and emotional toll is heavy.
My city councillor’s progressive façade withers when they ask, ‘can’t you just carry her?’. Meaning, can’t I just carry her from parking on the street to the front door of our home. Once I gather myself, once the cortisol stops its unstoppable march through my body, I reply, ‘she is not a bag of groceries, she is a person, and she is going to grow … it wouldn’t even be safe’. ‘And, what about the winter, and what about the fact that every other week we would be parking on the other side of the street, and so on …’. I am dumbfounded, deflated, and demolished by the lack of humanity and decency in their ableist response.
Moving ahead a few steps, I learn that as part of our appeal a neighbourhood poll will be needed to build community support for our project. The appeal process is ableist in advance. Again, the text says nothing of needs or the motivation for the change in design. It simply states that a request has been made. More work is needed, and so I develop a post card to plead our case; redacted here for privacy:
Our story
The family at … needs a parking pad for …
… has a genetic neuromuscular disease, called Spina Muscular Atrophy, and … cannot walk.
We need safe access to and from a van for … wheelchair.
The city … rejected our first parking application despite … disability. We have submitted an appeal of this decision.
We plan to re-landscape to contribute to the beauty of our streetscape. No trees will be removed.
I include a photo of our daughter, her face blasting from the page like a ray of sunshine. Our case focuses on the corporeal. I feel the need to engage with a bodies-on-display tactic to evoke emotional support for our plan. I play with the idea of loss – trying to connect the dots for people, between our requirements and something that most of them would be horrified to lose, i.e. the ability to ‘walk’. I then head out into the neighbourhood, and begin to make our case door-to-door. I carefully explain our story and nobody asks if we can just carry her.
The final step involves a family trip to the local community council – all of us, our daughters, and my partner. I end up standing before the council, our daughter in my arms – slightly bent over due to her emerging and troubling scoliosis, and generalized muscle weakness – to make our case. My legs are shaking, I’m incredibly anxious. We have been backed into a corner, forced to objectify and exploit the body of disabled child as part of a transactional, ableist city politics and service provision process, but we know that a positive outcome will make things perhaps a little bit easier and safer for us and for her. We have to use her disabled body as evidence to legitimate and validate our accessibility needs. We have been softly coerced into entering a terrain of intimacy with a group of perfect strangers, because we need to make our ‘place’ accessible.
The council is unanimous in their support – to my astonishment and outrage, the counselor who asked if I could carry our daughter to and from the house, lays claim to our work, suggesting that she has been ‘working with the family’ for some time on this issue. The hearing is over; its impact lingers on.
We are not the first, this is a not a new story when considered historically or otherwise. Time and again, examples emerge where disabled people and advocates have had to put bodies on display and enter into a one-sided telling of stories. Please, take the floor and pathologize thyself or another, demonstrate that you are indeed ‘disabled enough’, perhaps even super disabled, to receive our blessing and the bare minimum in support (Friedland Citation1999; Lightman et al. Citation2009).
My lived experience with ableism while parenting led me to commit to disability/ableism studies in my academic work about a decade ago. Although I am interested in seemingly countless questions – the nexus between disability and war has emerged as a new interest during the pandemic. There, I have located stories similar to ours. An unfortunate and strangely helpful exercise producing greater understanding of our experience and the painful politics of putting disabled bodies on display to garner institutional support.
Agent Orange and Operation Ranch Hand
Of course war produces injury, death, impairment, and disability. War is inexorably tied to childhood disability as well. In the 1970s, veterans of the Vietnam War and their families organized to seek reparations and support from industry and governments for children disabled by processes related to parental exposure to dioxin contained within the herbicide Agent Orange (among others), used in the U.S. government’s ecocide project, ‘Operation Ranch Hand’. Even the labelling of the project, ‘Ranch Hand’, evokes the imagery of imperialism and colonialism, and the ways in which their incumbent processes produce disability.
In her book, ‘em’, author Kin Thúy writes beautifully about the horrors of the defoliation program, ‘Operation Ranch Hand might have been celebrated as a military strategy had there not been all those American soldiers … affected by herbicides’ (Thúy Citation2020, 136). She also exposes the program’s embodied, dioxin-induced, consequential, and seemingly eternal generational genetic legacy, ‘confirm[ing] the power of humans to mutate genes, alter nature’ (Thúy Citation2020, 135).
On the US end of things, we can locate stories such as Kerry Ryan’s, as retold by disability historian Michael Rembis. Kerry was born in 1971 with a number of biomedical impairments. In his sharing of the Ryan’s story, Rembis writes, ‘They objectified and exploited their daughter’s body before a 1979 Congressional hearing in an effort to receive compensation from the chemical companies that produced Agent Orange and to make a claim for disability benefits for their daughter, who would apparently require a high level of care for the rest of her life’. (Rembis Citation2019, 384).
I understand where Rembis is coming from, in his re-telling of the Ryan’s story, but because of my experience with our daughter, I respectfully and speculatively suggest that the Ryans must have ‘felt’ the decision to put her body on display as they tactically exploited ableist and normative imaginaries regarding what bodies look like and what they can do, to produce a sympathetic outpouring of political good will.
Unsurprisingly, years of obfuscation would follow – ultimately leading to a class action settlement in 1984; the Ryans would never access additional support through this process, Kerry died in 2006 at the age of 35. The compensation issue remains unresolved in Southeast Asia, a mess unsurprisingly replete with questions regarding where and for whom compensation should occur. Meanwhile the generational impacts pile up.
In our case, there was an immediate effect following from a personally affectively devastating last resort engagement that really, as far as I could tell, required tactically centering our daughter’s body as the key argument or piece of evidence supporting our case. Of course, in the end, the city stood to make money, by saying yes, due to annual parking fees. As I reflect on this episode, I recall the community council ruling from a physically higher vantage point – the balance of power squarely in their favour, they are in charge, make your case, beg for lenience. In retrospect, the entire episode feels absurdly medieval and archaic.
Bodies on display
Of course, the relative magnitude and scale of the effects of the stories I’m telling here are not directly comparable. Nevertheless, I note certain similarities in the embodied elements of the political tactics employed by parents and children in disability justice projects, restorative justice in the case of Agent Orange, separated by more than four decades and an international border. Both are projects carefully crafted to generate reasonable support – dare I say, a ‘charitable response’, from governments for disabled people. Both required putting bodies on display as evidence that there is enough suffering here, enough disability, to warrant a government response. A strategic blending of care time (i.e. our labour of love as parents providing care) and crip time (i.e. our daughter’s experience of time) to make access happen (Samuels Citation2017; Stevens Citation2018).
Community council, congressional hearings, parking pads to Agent Orange, what’s old is new, what’s new is old – families, allies, bodies on display and forced to paradoxically work with and use medicalized, pathologized, sympathetic, charity-based discourse that WE often reject in everyday life, with a view to pushing institutions toward releasing the necessary resources to make places work better for our children and for our families.
Disclosure statement
No potential conflict of interest was reported by the author.
References
- Friedland, M. T. 1999. “Not Disabled Enough: The ADA’s Major Life Activity Definition of Disability.” Stanford Law Review 52 (1): 171–203. https://doi.org/10.2307/1229460
- Lightman, E., A. Vick, D. Herd, and A. Mitchell. 2009. “Not Disabled Enough’: Episodic Disabilities and the Ontario Disability Support Program.” Disability Studies Quarterly 29 (3) https://doi.org/10.18061/dsq.v29i3.932
- Rembis, M. 2019. “Challenging the Impairment/Disability Divide: Disability History and the Social Model of Disability.” In Routledge Handbook of Disability Studies 2nd edition, edited by Nick Watson and Simo Vehmas, 453–466. UK: Routledge.
- Samuels, E. 2017. “Six Ways of Looking at Crip Time.” Disability Studies Quarterly 37 (3) https://doi.org/10.18061/dsq.v37i3.5824
- Stevens, S. E. 2018. “Care Time.” Disability Studies Quarterly 38 (4) https://doi.org/10.18061/dsq.v38i4.6090
- Thúy, K. 2020. Em.” Random House, Canada.