The protection of people living with disabilities: A deep dive into the issues of the Parliamentary Review

On March 17, 2021, Bill C-7 received Royal Assent, a huge milestone for medical assistance in dying (MAID) and end-of-life rights in Canada. With the new law in place, the next step was the Parliamentary Review committed to in the Bill. The review included eligibility for MAID of mature minors, eligibility of those with a mental disorder as the sole underlying condition, advance requests for MAID, the state of palliative care, and the protection of people living with disabilities.

As part of our mission to educate and share knowledge, we examined each issue of the Parliamentary Review in a series of blog posts. We hope to give people across Canada insight into the reason for, and importance of each issue. We also hope you will be motivated to advocate for one or all of the issues by engaging your Member of Parliament.

In this blog post, we will discuss MAID and the protection of people living with disabilities.

Background

During the hearings and debate of Bill C-7, persons with disabilities indicated that they should be treated as individuals, not a monolith. The fears that some may have within the disability community must not hinder one’s access to choice. Everyone, including persons with disabilities, should therefore have both the right to live and the right to choose their end-of-life.

DWDC position on MAID and the protection of people living with a disability

Removal of the reasonably foreseeable criterion has expanded the constitutional right to seek access to MAID to people who are suffering intolerably but who are not near death. Those with a disability must have the same right to autonomy and end-of-life choice.

The removal of the reasonably foreseeable criterion does not remove the requirement that a person must have a grievous and irremediable medical condition and meet all the following criteria:

• The person has a serious and incurable illness, disease, or disability
• The person must be in an advanced state of irreversible decline in capability
• The person has enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable
• The requirement that a person make a voluntary request for medical assistance in dying that is not the result of outside pressure or influence

DWDC encourages continued consultation, done in good faith, with people living with disabilities and disability organizations across Canada.

DWDC strongly encourages increasing investments into additional supports for people with disabilities (including those targeted at enhancing income and social supports, reducing waiting lists for housing, specialist care, day programs and assistive devices, and assisting with the navigation of a complex and confusing health care system). We call for a commitment to fully support people with disabilities, so they have every opportunity to thrive. That is why DWDC urges all parliamentarians to support the passage of Bill C-22, the Canada Disability Benefit Act – federal legislation that will help reduce poverty and support the financial security of working-age persons with disabilities.

Insight from someone with lived experience

Senator Petitclerc

The Honourable Chantal Petitclerc is an independent Canadian Senator as well as an internationally renowned athlete. She lost the use of her legs in an accident when she was 13 years old and, since then has become a tireless advocate for the contributions of people living with disabilities, and she plays a definitive role in building a more inclusive society.

We asked Senator Petitclerc to share her insight and understanding of the protection of people living with disabilities.

Why do you think the protection of people living with disabilities was included in the Parliamentary Review of MAID?

It is an essential initiative that the protection of people living with disabilities has been included in the mandate of the committee in charge of the Parliamentary Review of MAID in Canada. This was supported by all in the Senate.

Early in the process of the study of Bill C-7, it became clear that while this legislation was a response to the Truchon decision – which ruled that the federal government’s MAID law was too restrictive, and failed to address the respect for the autonomy of choice and the right for individuals to have equal access to MAID – many people living with disabilities were worried and concerned with expanding the eligibility to permit MAID for people whose natural death is not reasonably foreseeable.

Despite the additional safeguard measures, broadening access to MAID comes with a level of concern for people living with disabilities, that were voiced, not only in the media, but also in the Senate, in the House, and both committees in which Bill C-7 had been studied.

Those concerns, questions, and fears have been heard and are taken into consideration; I believe that this is the right thing to do. This amendment was very strongly supported and so therefore it should be addressed.

How do you respond to the argument that rather than helping people with disabilities die, the government should be helping them live with better support?

We heard during the study of Bill C-7, some individuals saying that rather than helping people with disabilities to die, the government should be helping them live with better support. This was a strong message.

First of all, we are not helping people with disabilities to die. We are respecting the right of individuals with or without a disability to make the choice to end their life if they meet certain criteria. It’s about making sure that individuals do have the ability to choose how they want to end their life and to die with dignity if they so choose. This precision is very important because the words that we choose have meaning.

That being said, it became clear during our debate on Bill C-7 that there are a lot of gaps when it comes to support for people living with disabilities in Canada, including lack of social supports, lack of tools, lack of funding. We knew it before Bill C-7, and it has become even clearer with the testimonies that we heard.

My response remains the same; there are two main issues and I think we can achieve both. One, we can make sure that we have a way to respect the rights of individuals who, under the proper criteria and safeguards, choose their end of life. And two, we also have this responsibility to make sure that people living with disabilities have better support, better tools, and proper living conditions. This is extremely important.

What people need to understand is that we cannot achieve everything in the same process. It was frustrating for many, including myself, that Bills like C-7 – which amended the Criminal Code – was not the place where we could help people living with disabilities in other areas of life. This is not what we do when we are amending the Criminal Code. But it does not mean that it is not important. Of course it is. So, what I’m hoping is that we make sure we support people with disabilities to have a better life, while they also can have the right to choose how they want to end their life if they are experiencing intolerable suffering. Those two goals are not mutually exclusive, and we have a responsibility to fight for both.

From your perspective, what would an effective outcome be for this issue in the Parliamentary Review?

When it comes to the concerns that were raised by individuals and organizations of people living with disabilities, I think the best outcome for this issue in the Parliamentary Review should include a few things.

Firstly, that this review provides us a real quantifiable and qualitative state of things. What is the reality for persons living with disabilities in Canada? We need to know what we are talking about exactly. This is very important.

Secondly, what needs to come out of the review is a way forward to make sure we know what organizations representing persons with disabilities, but also, individuals living with disabilities are thinking. The challenge that I have experienced is that we need to make sure that the individual voices of these people are heard. It needs to be a balance of hearing from not only organizations representing people living with disabilities, but as well from individuals not officially part of these organizations. We need to continuously have this dialogue as the conversations about MAID evolve, as we review the safeguards, and as we open access more in the future. In order to do that, we have to make sure everyone is heard, so that when we come back at some point in time, with potential amendments to the law on MAID, we don’t end up having the same challenges or asking the same questions.

Finally, the third and last thing is that we need to follow, very closely, with data. What is happening with MAID now that Bill C-7 has passed? We need to have as much data and details as possible to build a clear picture of what people living with disabilities in Canada are doing with this bill. Who is accessing MAID, for which reason, in which circumstances, and in which socio-economic reality? That way, we will know the motivation behind wanting to have the right to access MAID, but also because it will help us recognize some socio-economic gaps as well as challenges in access to tools, services and equipment for persons with disabilities in Canada.

If we can achieve these three things out of this Parliamentary Review, I think that we will answer the concerns of the communities representing people living with disabilities, while also respecting the rights of individuals.

Have your say about MAID and the protection of people living with a disability

Do you want to help protect the constitutional right to medical assistance in dying? We have created an Advocacy Toolkit and Action Guide that provides you with the resources you need to effectively engage your Member of Parliament.