Consent is a concept back under discussion in modern conversations as we readdress what it means to cross the line. Consent is no longer seen in the black and white ‘yes’ or ‘no’. There is a zone of uncertainty, a zone in which consent is not so explicitly withheld and yet someone feels exploited. They feel that their will was not respected, or perhaps. they were unable to voice it. We are addressing how consent can be grey within complex relationships, blurred by pre-existing power dynamics, obligations, and dependence.
This is particularly relevant for persons with disabilities (PWD). It’s common to find for PWD to find themselves relying on doctors, friends, family, personal assistance services, and other caregivers in order to manage daily life. This type of relationship comes with many strings attached, which makes it vulnerable. It can be taken advantage of, in part, because the caregiver or doctor may already have many responsibilities and may not see themselves as overstepping, but rather playing their role in decision making.
When other parts of the relationship’s dynamic may put pressure on the PWD to comply, this empowers the other to push further into the others boundaries. When is a yes really a yes, and when is it an ‘I can’t say no’? PWD often feel bound to caregivers and doctors who play an indispensable role in their lives, and thus can feel unable to speak up or not want to damage a relationship that ultimately aids them, even if at times it may feel it crosses lines. This may make it seem counterproductive to complain if the PWD feels they could damage or lose their relationship with their caregiver, further restricting their freedoms. In order to have proper consent, it must be under the pretences that saying ’no’ will be okay, that there is not a fear of big consequences. When consent is tainted by conditionality or other aspects of life rely on that consent being given, the conversation becomes more complicated.
At a second anniversary event of Rising Flame, a non-profit for Persons with Disabilities (PWD) in Mumbai, India, the discussion of consent specifically for PWD was raised, and speakers discussed the many dynamics in which it can arise.
With Doctors
One speaker recounted the story of how doctors took advantage of the ‘rareness’ of her condition when he kept her coming for tests and trials to run clinical trials on her, trials made for his own research rather than for giving her answers. She felt because she had few resources to turn to, her reliance on his medical advice gave him power which he used to treat her as a guinea pig rather than honestly prioritizing aiding her medical needs. She felt exploited for her medical status, taken advantage of by the person she trusted to be the first to respect her health. This patient, Nidhi Goyal, India’s first visually impaired stand up comedian, who lost her vision to a degenerative disorder in her teens, took this story as inspiration to initiate a conversation on consent and what it means in the medical world for patients with disabilities (PWD).
Goyal describes other avenues in which consent, or lack thereof, is particularly relevant in the community of PWD.
With Caregivers
A caregiver is often at the core of a PWD’s life, responsible for the daily in and outs. This prominence entrusts them with high level of responsibility and thus is often the first place where patients can be taken advantage of. Because they are given a position that has influence and advisory roles, manipulation or abuse can be guised as ‘help’. Another reason this is the primary relationship vulnerable to abuse is that because this is the role a PWD relies on the most, thus not wanting to create more issues or tension. When your caregivers gets you to work and makes you food and helps you get into the shower, a patient can feel indebted to them or fear it will make life harder because they cannot get by without them.
With Romantic Partners
Patients with disabilities often describe an imbalance when it comes to romantic relationships. PWD discuss the unhealthy societal framing of inter-abled relationships. People expect PWD to be with somebody else with disabilities, and if not, it’s seen that they’re being done a favour by the other for putting up with their disability. This type of thinking is not incredibly patronizing and ablest, but it forms a toxic complex in relationships. If the couple feels the able partner is ‘doing the other a favour’, it gives them leverage to expect the PWD to owe them something for it.
When is the line crossed?
The concept of consent is so complex in part because of how many forms it can manifest in, how it is not always explicitly addressed in the first place, and how hard it can be to create a line in the grey between disagreement, manipulation, exploitation, and blatant abuse.
At times the issue is that caregivers and families can take away PWD decision making power, claiming responsibility and making their choices for them. This can mean making decisions about their schools and homes, or as speaker Harpriti Reddy described, about who they marry. Reddy describes how her family selected a partner for her due to her deafness, a tradition to marry people who are deaf with people are not deaf in hopes that the faulty genes are not the ones passed on. It can mean making choices about their medicine, therapy regimen, or financial decisions. It can mean simply not respecting privacy of PWD or their right to barriers. Reading their personal papers, being controlling or making decisions that the PWD wants to make themselves but feel unable to express it.
More explicit violations of consent can come through a whole host of abuses including physical, emotional, financial, manipulation of necessary equipment or medication, and sexual harassment and abuse. This type of abuse often can go unreported because victims will feel unable to speak up. In the study of the Indian state of Odisha that surveyed women with disabilities, 12% reported rape. When it came to sexual harassment, it was way more common at nearly half.
The prevalence of such violations is vastly higher than for non-disabled people. The issues surrounding more blatant abuse deserve an article in entirety. This article is less about the obvious abusive, and more about the line. However, both ends of the sprectum are often in part due to a similar issue- dependence or a power inequality. While blatant abuse is more often recognized as such by both parties, the subtle infringement on consent is less obvious. It can be less intentionally harmful, and more the effect of lack of consideration or respect.
How can we work on this issue?
This vulnerability and overstepping often comes from the power imbalance or isolation that can prevent PWD from having mechanisms for support. The less freedom someone has, the more someone with disabilities must rely on a person– and in turn,blurrier the line. It’s more likely someone will feel they have to accept unwanted behaviour– because rejecting it may come with a bigger trade off. PWD are more likely to be taken advantage of when they do not have mechanisms for independence, self-care, or ways to speak out and get help.
For this reason, there should be mechanisms to counteract these vulnerabilities to empower PWD to get help if needed and to feel secure in saying ’no’. This abuse of power is not always reported and can go unaddressed if that mechanisms to complain are not always present accessible.
This requires making infrastructure to voice complaints: PWD report that basic architectural accessibility is not always available at public offices where they could complain, or at businesses where they could work and establish financial independence. Businesses also must have accessible workplaces including now only ramps or elevators but flexible work hours, the ability to take off for unexpected reasons. PWD must also know about the services available and there must be resources available to actually made an impact. It comes from having PWD in politics and decision making roles who would think of and understand the communities needs and prioritize making public spaces and workplaces for everyone, not just those who are not disabled. This means making disabilities more visible and making those making decisions more aware of the community, speaking out about exclusivity and pointing out barriers.
It also comes in the form of self-empowerment. This can mean fighting against reembarrassment or shame, or realizing the ability to make choices and to stand up to the authority figure. This is easier said than done- authority and power tend to be self-reinforcing, and it means looking outside ourselves and facing a struggle. In the end though, decision-making is empowerment, and patients with disabilities deserve this.