Neutral Conceptions of Disability Law

Isabel BaltzanBy Isabel Baltzan

As my internship with the the Instituto de Democracia y Derechos Humanos at the PUCP in Lima and the course on disability law comes to an end, I wanted to write out some final reflections.

A huge aspect of the course, beyond explaining how legal frameworks function with regard to disability, was determining what moral values underpin the laws in place. For example, we discussed the transition from a medical model of disability – wherein a disabled person is responsible for overcoming their disability through science and medicine (e.g. seeking to remedy a disability through consultation with a doctor, or medication, etc.) – to a social model of disability – wherein the world around a disabled person is what poses limitations to their existence (e.g. having stairs be more commonplace than ramps is a societal choice).

The underlying assumptions in these models are vastly different, as the medical model proposes an individualist approach to disability – and assumes it is always unwanted, a burden, a drawback. The social model, on the other hand, is much more collective – seeking solutions to barriers outside of just the disabled person and into society itself; this conception doesn’t assume that disability is inherently bad, or good; it just is, and we must work with it.

This neutral conception of disability is compelling, because it withholds judgement. Another topic we discussed in class at length was the many stereotypes and assumptions people have about disabilities – and I came to terms with my own. A super common one, for example, is the assumption that disabled people are pure, kind, angelic, harmless, vulnerable. This is a positive stereotype, but it is a stereotype nonetheless – one that can harm disabled people in different ways (see, for example, the discussion in the film Crip Camp surrounding sex, desire and sexual identity being forgotten when it comes to disabled people).

Having a neutral conception of disability is a good first step to conceiving of laws in a neutral way. Based on this idea, we had a later discussion in the class about the value society attributes to disabled lives, eugenics, and abortion. With Peru being an overwhelmingly Catholic country, its religious and legal heritage are intertwined, and abortion has been illegal since 1924 except for in cases where the mother’s life is in danger. There are criminal penalties to undergoing abortion for any other reason. There is a wrinkle in the law, however: the penalty for an illegal abortion is lower if the pregnancy resulted from a violent act outside of marriage, or non-consensual artificial insemination outside of marriage; and if the pregnancy is probable of resulting in the birth of a severely physically or mentally disabled child.

There is a ton to unpack within these provisions, but the only focus of our discussion was, ‘why do we punish people less for illegally aborting probably disabled foetuses, than when they abort probably non-disabled foetuses?’ The answer was tricky to defend, because the provision inheres that it is more reprehensible to abort a non-disabled foetus than a disabled one. Ergo, disabled lives are worth less than non-disabled lives. The only defense that came up was that disabled children can be a huge stress on their families, both emotionally and financially, and that many families are not ready to raise a disabled child – and it’s understandable that someone would want to go forth with abortion in that case. However, this defense quickly falls apart when it is considered in light of the entire set of provisions, which highly restrict when women can decide to abort at all, with the only valid excuse being ‘I am going to die if I continue with this pregnancy.’ The thorniness of the whole ordeal is because the law isn’t neutral – not with regard to abortion, nor the value of women’s choice, nor disability. So, we sought out solutions – neutral conceptions of law – that would remedy this issue.

As this discussion was unfolding I was fervently Googling away, trying to understand what the heck everyone was talking about when discussing therapeutic and eugenic abortions – I had only ever heard of abortion, tout court. And then it dawns on me – I’ve never heard of any of this because we don’t use any of these terms in Canada. Here, the law on abortion is …almost non-existent. R v. Morgentaler tells us that it’s an infringement on S. 7 to impose any. The choice is entirely left to people who get pregnant (and the health networks that service them, but that’s another issue). The law takes basically no position on abortion in Canada; it is as close to neutral as you can get.

I finally piped up and gave the example about Canada and its neutral conception of abortion, even if it maybe isn’t a realistic model for Peru to adopt. It’s a different country, with a vastly different culture and different values, and dropping an unwanted Canadian superiority complex into class with regard to abortion laws wasn’t my goal. I wanted to illustrate it as an example of a neutral conception of abortion, which in turn is also entirely neutral with regard to abortion of disabled foetuses. With a complete 180 of Peruvian abortion laws being a bit abstract, the professor suggested another non-discriminatory solution, which sounds radical on its face. She suggested that we stop giving health information about foetal disability to pregnant people – because if they don’t know this specific information, they don’t choose to abort based on this specific information. My knee-jerk reaction here was, ‘But people should know if they are going to have a disabled baby! Why wouldn’t just making the entire law neutral avoid the whole ‘aborting-disabled-babies’ thing?’ Well, what I hadn’t considered was that though we might think that we are not biased against disabled people, we still might be. Because, wanting to know if a child is disabled might be about preparing to welcome them into the world, but it might also be about deciding whether or not to abort them. That choice, in Canada for example, is the mother’s own, and there is absolutely value in that – I cannot stress that enough. Yet, we cannot discount the insidious power that our own social values have on this decision as well – because a country with a more neutral, or even positive, conception of disability wouldn’t condone the abortion of disabled foetuses only because they were disabled. Yet for now, in Canada, that definitely isn’t the case: if social norms dictate that disabled people are less worthy, nothing is stopping pregnant Canadians from aborting disabled foetuses because they subscribe to that stereotype.

My conclusion after mulling over this conversation for a few weeks isn’t stagnant. I’ve toyed with these ideas that make me a bit uncomfortable, and I’m not sure where I land. I think the best conclusion I can draw from this entire discussion is that, though some places boast neutral laws (e.g. my understanding of Canadian abortion laws), that doesn’t necessarily mean that they are morally neutral on ideas. Letting women choose is always the right decision in my opinion, but I had never considered the extent to which choice, as much as it feels like our own, is influenced by the world around us – and if the world around us devalues disabled lives, we are prone to devaluing them as well, and making choices that reinforce that societal stereotype.

Cheers,

Isabel

Peruvian Disability Rights and Civil Reform

Isabel BaltzanBy Isabel Baltzan

For my IHRIP experience, I’ve had the opportunity to join the Instituto de Democracia y Derechos Humanos at the PUCP in Lima — following along with a course on disability law and disability-related human rights issues in Peru, with work in an accompanying legal clinic. This is my first legal internship experience. I felt nervous and unprepared at first, and so, so far from any of my classmates over 6,000 km away.

I’ve been placed with a group of students, all in their last year of courses, and thrown into a course that expertly draws the historical and legal framework for rights granted (or not) to disabled people in the region. The course focuses on interesting and important ethical and moral debates that the law needs to answer for. I’ve quickly realized that though I’ve done a year of law school and a few years of living before that, I am in no way at the caliber of the people around me — not in legal knowledge (let alone in the Peruvian system), not in disability rights, nor in Spanish (never even mind legal jargon). So, I’ve spent a lot of time listening, filling in knowledge gaps on my own time, and mulling over the issues that are brought up.

I want to point out some thoughts I’ve had over the course of my internship, with it being my first dive into the world of human rights and disability. Granted, I never really know what’s going on — as an intern I expect to feel lost but doing it over email, WhatsApp and Zoom really adds to that feeling — so classes are always an interesting surprise, as are the cases we are presented. I’ve first learned that Peru has recently undergone an overhaul of its disability rights, and changes enacted in 2018 now allow people with disabilities to take advantage of their legal capacity — their ability to manifest a will, and move through the world much like everyone else does. This in turn has been accompanied by the phasing out of interdicción, a state in which a disabled person is deprived of their rights (under the guise of their best interest) and all legal decisions are handed off to a curator — with little to no oversight of how effective or respectful the process is. Nowadays, a system of apoyos (literally, ‘supports,’ but possibly better translated as advocates) and salvaguardias (safeguards) has replaced interdicción. The current system seeks to support disabled people in the exercise of their legal capacity, ideally while respecting and affirming their needs and wants. The new system also benefits from oversight granted by safeguards. A fantastic reform.

Now, of course, just because we say things are different doesn’t mean they actually are any different. Calling the same thing by another name is not progress unless actual change occurs. Progressive law (more progressive than lots of places — cough, California, cough, #FreeBritney), as amazing as it is when enacted, needs to be followed for anyone to reap its benefits. One issue that came up often was disabled people petitioning for rights at the court and the judge requiring them to get an apoyo to be granted what they might be asking — even though the disabled person seems completely able to exercise their legal capacity. Why? Perhaps the judges are used to working through curators with the disabled population. Perhaps, discrimination and stereotyping prevail. Possibly, a misunderstanding that something was supposed to change after 2018.

One case in particular comes to mind as an example of the darker side of reform. It had been moving through the courts for quite some time, and involved an older woman who had been under a curator — someone close to her — through interdicción, for many years. Unfortunately, the curator had passed and the woman was left in a sort of vacuum — the interdicción system had been overhauled, so she wouldn’t get another curator, and would need an apoyo if any legal issues came up, which eventually they did. Seems easy. Except, in order to begin the process of naming an apoyo for herself, she needed some documents from an office that wouldn’t give them to her because she needed legal representation through a curator (deceased and irreplaceable) or an apoyo (yes, a total real-life, awful catch-22). Funny enough, this situation is analogous to one described by Lon Fuller in his Eight Consequences of Failure — “(6) rules that require conduct beyond the powers of the affected party.” The solution was for the legal clinic to request a procedural curator for the woman just until she got an apoyo — but in the meantime, this woman has suffered serious violations to her rights to access to justice and to defense, leaving her effectively in a state of utter vulnerability. This can’t be the progress sought out by the reform, but it’s the reality of the situation.

The whole affair underscores for me how important it is to consider the impact of sweeping reforms that seek to improve a system — to consider who exactly is making a sacrifice for the benefit of all. It really highlights how important it is for the systems in place to move with reforms, instead of just letting reforms pass through them. This isn’t to say that my entire experience at the IDEHPUCP has been disheartening, though it’s unrealistic to assume it would all be joy and glory. The clinic does incredibly important work to educate students and the public on disability-related topics, and it is fulfilling beyond belief to be a small part of meaningful and impactful changes in people’s lives through the clinic. I’ll write more soon about the experiences of clinic work and some interesting debates we’ve had throughout the course.

Cheers,

Isabel

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