Ableism and Medical Assistive Technology
“I beep.
My heart rate speeds up and my cheeks brighten as I utter the same introduction, one that I know backwards and forwards because we do it in every class since the beginning of the program. I duck my head and look down at the cold piece of metal in my fingertips, attached to me in a tangle of plastic and glue. There has to be a reason why I start off every introduction I’ve made in graduate school with that sentence. Flustered, bashful, apologetic: it is never something I am proud of, much less something I want to say aloud. I beep. I beep to live. Look at me do it — right here, right now — as easy as breathing. Inhale. Exhale. Beep. It’s not as frequent or as rhythmic as the beeps of an EKG monitor, yet I feel the need to subtly apologize for it in my introduction to colleagues, as if to say I’m sorry for bothering you with the way in which I live.
I beep.
I beep because Type 1 Diabetes is about being a person with diabetes not a diabetic, and yet I can’t escape the physical manifestations, the sounds that surround me even through sleep like numbered sheep.”
Cristal J. Llave. 2018. “Between Beeps: An Autoethnographic Study on Type 1 Diabetes, Intersectionality and the Body in Chaos.”
Type 1 diabetes (T1D) is a rare-ish disease, typically diagnosed in the first few years of life or childhood. But people can develop T1D at any age. T1D is mistaken, often, for Type 2 diabetes (T2D): one of the most common diseases in the United States. These diseases are radically different, yet share technologies but not the same experiences or structural inequalities. For example, Type 2 diabetes is closely linked to poverty, structural racism: access to grocery stores, employment, safe housing, and medicine, including medicine that can prevent the onset of the disease. T2D communities face severe stigma, body shaming and stigma due to the myth that people are at fault for getting the disease due to their diet and exercise. In the United States because of structural inequalities that myth is not only ableist but racist.
Type 1 diabetes is a rare autoimmune disease. By analogy, the body’s immune system develops fighter cells, much like when a person is given a vaccine; these fighter cells attack beta cells, whenever they are produced by the pancreas. Beta cells are life’s energy force, they create a hormone called insulin, and insulin allows cells to use the food we eat as energy, nourishing and supporting our bodies. Persons living with type 1 diabetes either do not create Beta cells after a time beyond diagnosis, or produce too little, and the body attacks those cells anyways. What happens to a person whose body attacks their own organs and cells? We must replace the hormones our bodies once produced with synthetic versions of insulin. Something to know of your body is this: every time you eat, the level of glucose in your body rises. In response to the rise, your body increases production of hormones such as insulin and also other hormones that aid digestion. On a daily basis, a non-T1D’s blood glucose levels fluctuate somewhere between 70–80 ml/dl. In other words, your blood glucose varies, too. Non-T1D persons are not trained by medical professionals to recognize these fluctuations. To non-T1Ds, it might feel simply like the normal processes of being hungry or not, feeling shaky and sweaty and weak after exercise until some sugar or carbs are consumed. For persons living with T1D, however, this is not how fluctuations feel at all times, in severity or sense. Partly, this is because our fluctuations can have a much wider range, going from below 60 (at this level a person can seizure, enter into coma and die) to over 240 (at this level, the body starts producing a toxic chemical that can lead to death in hours and days, if blood glucose levels remain here or go higher). Every day, your colleagues who live with T1D strive to manage the fluctuation of their blood glucose levels on a minute by minute basis, knowing the consequences.
While not perhaps as well known, the T1D community has culture, norms and history, like many communities of people living with disabilities. For example, many of us have attended summer camps for children living with T1D. For some, this was/is the one time a year we were surrounded by people living with T1D, as the disease is somewhat rare, and it is not frequent for every person to meet or know another person living with T1D. At camp, we learn everything from survival strategies to things non-T1D children learn. We trade stories of technology, innovations in care, and beliefs of the possibility of a cure for our disease. We have a history of technologies, the founding and invention of insulin — — we are, this year, celebrating the 100th anniversary of insulin therapy, which transitioned T1D, once a terminal illness (usually with death occurring within a year of diagnosis), into a condition of living years of longitude on top of latitude; people can achieve life spans, though rarer, into 8th and 9th decades. This is cause for celebration, for those who feel this way of longitude.
Unfortunately, our engagement in sense-making about the end of our disease is commented on by non-T1D disability communities and also non-disabled persons alike. We are told to embrace our disability and to maintain hope for its end. It is not really up to any person, T1D and not, to tell someone living with T1D what they should think about living with our states of being and fluctuation. That’s not activism or disability justice. That’s sense-splaining. It’s not up to anyone but us as individuals to say whether we should hope for a cure or medical care improvement. For us, hoping for a cure is not the same as hoping not to be disabled. It is celebrating the possibility of increasing the quality, yes quality, of our care and lives. Living with painful diabetic neuropathy, kidney failure, heart disease, amputations, and blindness is a process of becoming and transitioning that is painful, emotionally and physically. By acknowledging the sensations our bodies feel as we progress (or not) towards different states and bodily senses, all perfectly valuable, normal and dignified; we are describing how we feel, not judging if life is valuable at any given state of being. The states and senses of being alive and human are always valuable, equally entitled to dignified treatment, and what persons define differently as “quality of life.” Quality of life judgements are decisions of individuals, not collective judgments handed down, not up to us, disabled or not. As part of managing our T1D, we are entitled to process, discuss, describe, mourn, and rejoice in our feelings and senses of being here. To limit our emotional processing vocabulary to “happy” or “not”, “proud” or “not” regarding our futures and hopes as disabled and diabetic is ableist. Processing how we feel at any given time is an extremely private conversation, for some, only participated in by close family and friends. For others, these conversations take place in public places, such as Twitter, Reddit, and in the activism we do.
“Bearing all my scars is more than the sticky remains of infusion sets or bruises on my thighs, it is the words that people have said, the return to the scenes of where others’ words seep and manifest into my fears of stereotypes and judgements, and the brutal reality that I was the exact same way before I was diagnosed myself. It was almost too much to bear, and I couldn’t turn it off. The inability to escape the beeps and buzzers, the reminders of the vulnerability and hardship constantly recycled through my memory, revisiting and reopening scars and bruises that have yet to heal, and the constant discipline expected from me to respond to each of these accounts was suffocating.” (Cristal J. Llave. 2018)
Like any community, we are subject to the gaze of people who do not share in common our lived experiences (Cristal J. Llave. 2018). Gazing and observing the lives of people is fine sometimes, and harmful also. For instance, persons living with T1D have voluntarily participated or been approached by medical researchers and asked to participate in medical studies, experiments. These studies have led to meaningful breakthroughs and advancements in care, but also have left T1Ds feeling like a data point in a regression equation: without voice in the narratives told about our lives and futures. For instance, have you ever been asked to extract an organ from your body for scientific research, to live in a hospital so doctors could shut off your entire immune system, possibly killing you, to advance stem cell science? We are not weighing whether to contribute our demographic data on a survey form, we are being asked to contribute our lives, the only ones we have. What have you done for science? What sacrifices have you made for the lives and futures of people you don’t even know?
“You can tell me everything my Diabetes is not, but will you listen to what Diabetes is? Diabetes is more than insulin injections, infusions and bruises, hardened stomachs and battered thighs we hide because you can’t bear to see the pointed metallic tip of a needle too close to your food when we don’t have a choice. I’d never be able to, you say. I sigh, I wish we had a choice. If we don’t do it, we die.” (Cristal J. Llave. 2018)
To describe our lives by deficit narratives and the technologies that help to keep us alive as making us other than “perfectly” and “normally human” in all our variations, states, and senses is a grotesque violation of our human rights and dignity.
Narratives are important and impact peoples’ lives and sense of self. Research shows that especially women living with Type 1 diabetes and assistive technology are prone to developing eating disorders and to have body image challenges. Anxiety around dating (when is the right time to mention one has an artificial organ?) and fashion (how does one wear an artificial pancreas?) are common. It is important that the T1D and diabetes community at large develop a language of empowerment around our technology and bodies to combat stigma and feelings of difference. Nobody can or should do this work but those living with diabetes and our assistive technologies.
Do you know the history of technology in our community?
Prior to reading this, would you have been able to accurately describe what T1D is?
Did you take the description of a single person, who is a privileged member of the T1D community, to describe every person?
Do you know of the political tensions of non-diabetics classifying T1Ds and Type 2 diabetics (T2D) as a homogeneous mass of diabetics? Do you know the other ways people are diabetic beyond that binary?
If you do not live with any chronic medical condition, likely all of your internal organs are located on the inside, away from the gaze of people who are not in intimate relations. The location of your internal organs is an extreme privilege. It saves you from people commenting on your internal organs, turning your being into a scientific fiction or horror, based on their perception of your body’s internal organs and cells. Please consider reading the history of eugenics. We are not science fiction. Our lives are not open to others’ interpretation, disabled bodies have been marked throughout history, and these markings have led to efforts to eradicate us, whether through genocide or eugenics. Further, we are not on display in the circus for the entertainment of non-disabled people. We are people, fully human, managing the circumstances of our lives the best we can, hoping for friendship, dignity, and respect.
“The unraveling does not occur there. It is when we open the door from our private spacing and invite the perspectives of the people around us do we really know fear and anxiety.” (Cristal J. Llave. 2018)
If it is harassment to comment on a non-disabled person’s body (and external organs) in a workplace, it is harassment to, without consent granted, comment on our bodies and internal organs and cellular processes — and, our ways and means of crafting and hacking, whether our body parts are machines or flesh. If you would not call your child a reclaimed word or slur (“cripple”) of and owned by disability communities, because you would fear their interpretation of your words would cause harm, or because they do not yet refer to themselves that way or because children have the right to develop their identity autonomously, then do not — without consent — describe the identity of disabled people at any age or stage or state of being.
Do not mis-able our bodies for fascination and intellectual exploration.
Ask which organs are visible to a society’s gaze, and why do people discriminate on that basis?
Act for human rights. Consider what actions and language are considered harmful by society and why.
“I do not wish to add to the rhetoric of what constitutes a “good” or “bad” Diabetic or “good” or “bad” interaction in my story. My argument is that beyond the “good” and the “bad” stories, we must acknowledge the beeping, the disruptions, the chaotic story that begs to be heard before we decide the moral reasoning behind it. If we first look at how we talk to each other, how ‘I’ talk to ‘them’ and ‘they’ talk to me and reflect on that process, we can begin to tackle the larger issues of morality and biomedical culture.” (Cristal J. Llave. 2018)
Do not define disabled identities and states of sensing, feeling and being alive for us. That treats us as dependent on others and removes our agency to define who we are.
“In essence, I do not wish for anyone, the stranger on the bus, the barista at the coffee house, or the new acquaintance at the party to know, without my prompting, that I have an illness. In this way, I can enact power upon my disruption by choosing when and where my illness manifests, on what days I pull my pump out of my pocket, or not.” (Cristal J. Llave. 2018)
