Final Reflections and Lessons Learned

2015 Zidel Max 2By Max Zidel

As I write my final blog post, I watch through the big glass windows at Budapest International Airport as the various planes pull out of their gates, accelerate and disappear into the sky. In an hour or so that will be me, boarding an EasyJet flight for Berlin and eventually Italy, where I will spend a couple of weeks with friends before returning to Canada.

As I sit and enjoy my espresso (one of my favourite pastimes), I am conscious of the Hungarian words that hang above me – “felvonók” for lifts, “mosdók” for washrooms – which remind me of the unique culture and kind people that I leave behind. I think about all the amazing nights I spent with friends by the Danube or dancing on Margit Island (it’s a little island-park between Buda and Pest); I think about all the amazing people that I met – through work, family friends or living arrangements.

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Of course, while I have many great stories to share about my short three months in Budapest, I have decided in my final blog post to make some concluding remarks about my experience here as a human rights intern, and some of the key lessons I have learned about law, social justice and even myself.

1. Personal experiences are crucial, but there is a danger in generalizing. Having grown up with a sister with severe intellectual disabilities, I have had many first-hand encounters with the ways in which law and mental disability interact, as well as with trying to live up to the needs and aspirations of someone who was often incapable of verbalizing her thoughts and feelings. This kind of personal connection and experience was essential to my work at MDAC, but I also learned how important it is to keep it in perspective. My sister’s story is really only one among many, and what she may have wanted out of law or life is not necessarily what other individuals with mental disability may want. And this works both ways. For example, while the CRPD’s General comment on Article 12 rightly callsfor an end to guardianship and a move toward supported decision making, I fear that in my sister’s case this would be a step in the wrong direction. Incapable of understanding notions like ‘money’ or performing basic tasks like getting dressed or preparing a meal, my sister’s dignity and autonomy were greatly enhanced by some of the substitute decision making carried out by my parents. But while this may be true for my sister, I have no doubt that it is probably not true for the vast majority of individuals with mental disability.

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2. Legal human rights work doesn’t always feel like human rights work. Legal work can be powerful and impactful, but it can also be highly removed and impersonal. Though I very much enjoyed the various research tasks I was assigned to and am really pleased with the amount of knowledge I acquired in the process, I am aware of how often I simply disconnected from the real world while sitting behind my desk. Just as in law school, I often found myself in a universe of legal jargon – where peoples’ stories were simply fact summaries and fundamental rights a means to some strategic objective or outcome. This is not to say my desk-work was not important – it was and I do believe that it will eventually lead to some real change and impact at a very personal level for some of our beneficiaries. I just thought it important to point out that I sometimes felt like that wasn’t the case, and that maybe there is a better balance that can be struck between engagement and legal work.

3. It is hard to go somewhere when you don’t know where you are going. Over the past few months, I learned that it is much easier to denounce something that’s wrong or unjust than it is to articulate a promising alternative. If guardianship is abusive, invasive and belittling, then what do we propose instead? If institutions are broken and harmful, then what is a better vision based around community care? These are the challenges we faced every single day at MDAC. And rightfully so, because it’s not enough to tell judges and governments that the current ways aren’t working if we don’t have any better ideas. And we don’t just need ideas, but also ones that are affordable and implementable. This is no easy task, and indeed it often felt like we were driving into the abyss without any maps to lead the way. Human rights, it seems, is not necessarily about “immediately realizable” rights, but more so about courage and experimentation, and an acknowledgement that the world we live is and will continue to be – imperfect.

All in all, I am really glad I got the chance to work at MDAC and participate in this amazing internship program. I really look forward to reflecting on all of these issues in greater depth as I begin the process of writing my term paper this fall!

What Rachel and Robert Want: How Should The Law Approach Legal Capacity?

2015 Zidel Max 2By Max Zidel

Imagine for a moment that you have a 20 year-old sister named Rachel who has severe intellectual disabilities. While Rachel can usually answer simple yes or no questions, she is for the most part non-verbal. Further, as a result of her particular mental capacity, Rachel is not generally able to understand complex ideas – particularly those pertaining to concepts like health or long-term well being.

Imagine now that it is ten minutes to midnight, and as per usual, Rachel refuses to brush her teeth. Should you be able to force her to do it, even though she hates it? On the one hand, you are aware of the fact she is an adult, and that she is entitled to make her own decisions about how she wants to live her life. And anyway, you feel terrible about forcing her to do something that you know she hates or feels uncomfortable doing. On the other hand, you know that if Rachel doesn’t brush her teeth on a regular basis, she will surely develop severe health problems and eventually have to have her teeth removed. Not only will this be painful and expensive, but it will cause her a great deal of discomfort on a daily basis and prevent her from eating many of her favourite foods. Rachel, for example, absolutely loves eating a hot dog at a Blue Jays Game, and you dread the day when you will have to deny her one on account of teeth problems that she may not fully understand. You are also afraid for her: the kids in the “normal” stream at her public school already giver her a hard time for being different – imagine what they would say if her teeth were missing (though of course they shouldn’t care, this is the society in which Rachel lives in). But no matter how many times you try to explain the consequences of not brushing her teeth to Rachel, you know that because of her particular mental capacity that she just won’t be able to fully grasp the implications of her choice. And deep down you know that if she did understand those implications, she would probably just suck it up and brush her teeth. As a loving sibling who respects Rachel’s autonomy but also cares a great deal about her well-being, what are you supposed to do? More importantly, what should the law allow you to do in such a case, if anything?

IMG-20150708-WA0006Take another example. Your husband Robert is dealing with a mild form of paranoid schizophrenia. Though Robert’s condition is extremely manageable and for the most part highly stable, every so often his symptoms become severe for a short period of time. Over the past few months, Robert and yourself have been making extensive plans to move into his late mother’s flat that he recently inherited. Everything is ready – the new floors, paint, tiling etc – when suddenly Robert’s symptoms flare up he becomes convinced that moving in is no longer a good idea and that instead he should sell the flat immediately. You know – or at least you believe that Robert is not thinking clearly and that he would regret it immensely if he were to proceed with the sale. You try to talk him out of it by revealing the contradictions in his current thoughts on the matter and emphasizing his previous plans, but it doesn’t seem to work. Robert has already found a buyer and he is convinced he needs to sell the flat as as fast as possible, even if at a significantly reduced price. Should you be allowed to intervene? if so, for how long and with what powers?

IMG_20150708_135004987The answers to these questions are far from easy, and they have occupied the minds of legislators from as far back as those who instituted the system of tutorship in Ancient Rome. They are also precisely the questions we at MDAC had to grapple with this morning during a presentation led by some of our interns on the notion of ‘legal capacity.’ For the next few days, MDAC’s interns will be leading presentations on different aspects of this central concept in disability rights as a precursor to a much larger research project that MDAC will be launching sometime in the coming months.

“Legal capacity” is a legal construct that signifies the ability of an individual to have and exercise rights and obligations, which range from taking out a loan to consenting to medical treatment. In the case of persons with intellectual or psycho-social disabilities, the notion of legal capacity has often been conflated with that of mental capacity, which has led to a system of enforced substituted decision-making, whereby the capacity of these individuals to make even basic decisions is stripped from them and placed in the hands of a family member, friend or representative of the state. For the governing UN treaty on disability rights – the CRPD – the answer to this tendency is clear (see the 2014 General Comment): such a conflation of legal and mental capacity is simply discriminatory and therefore arbitrary, and states should therefore abolish all forms of substituted decision making. But is this position always defensible?

IMG-20150708-WA0003During the meeting, we looked carefully at the two examples above in order to take a more nuanced look at the CRPD position and the particular conception of individual autonomy upon which it relies. As most of us seemed to agree, the CRPD’s call for a movement away from substituted toward supported decision-making is a well-needed intervention in a huge number of cases where a person’s most basic rights and capacity for autonomy is arbitrarily taken from them solely on the basis of disability. However, when we took the CRPD’s logic and applied it to cases like those of Rachel and Robert, not all of us were entirely satisfied with the potential consequences of such an unbending position.

How responsive would Rachel be to the kind of supportive decision-making that the CRPD advocates? What would that look like? Are we satisfied that her autonomy is even enhanced by allowing her short-term discomfort to overcome the long-term well-being she may be absolutely incapable of seeing? How about in Roberts case, where it is highly likely that Robert might actually get really upset with his partner for allowing him to sell the flat during during a difficult period in Robert’s schizophrenic cycle?

At the end of the session we were of course left with more questions than answers. Moving forward, we will be hearing presentations on some promising approaches from jurisdictions that have made great efforts in trying to define autonomy and ‘will and preference’ in the context of persons with mental disability. We will also be looking at how they balance the protection of these rights against other core rights, such as the right to health, life and long-term well-being. Slowly but surely, we hope to build effective guidelines for states trying to promote the right to legal capacity for individuals with mental disability. Stay tuned for more developments!

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