Tag: coronavirus

Launch of the COVID-19 Disability Rights Monitor

No Comments on Launch of the COVID-19 Disability Rights Monitor

The voice of disabled people is important and badly needed, especially when it comes to how coronavirus and COVID-19 have effected how an already marginalized group, with a wide variety of needs, access healthcare, basic necessities, and other supports during this unprecedented time. If you are disabled or work with an organization that serves people with disabilities, please share your voice and fill out this survey:

COVID-19 Disability Rights Monitor

“Evidence is emerging that persons with disabilities are being disproportionately affected by the Coronavirus pandemic and emergency measures being taken by governments worldwide. As governments rush to respond to the virus, it is more critical than ever to guarantee that measures taken are fully inclusive of persons with disabilities and prevent human rights violations from taking place.

With the endorsements of the United Nations Special Rapporteur on the Right to Health, Mr Dainius Pūras, and the UN Special Rapporteur on the Rights of Persons with Disabilities, Ms Catalina Devandas Aguilar, a coalition of six disability rights organisations is today launching a major international monitoring initiative entitled “COVID-19 Disability Rights Monitor” to conduct rapid independent monitoring of state measures concerning persons with disabilities. The first element of this global initiative is the launch of two surveys requesting official information from governments and requesting the testimonies of persons with disabilities and their representative organisations. The surveys aim to collect information about what states are doing to protect core rights of persons with disabilities including the rights to life, access to health and essential services.”

Disability Advocates Call for Immediate Change to Hospital Policies Designating “Essential” Supports/Visitors following the Death of Ariis Knight

Comments Off on Disability Advocates Call for Immediate Change to Hospital Policies Designating “Essential” Supports/Visitors following the Death of Ariis Knight

MEDIA RELEASE

For Immediate Release                                                                May 5, 2020

The Council of Canadians with Disabilities (CCD) and the Disability Alliance British Columbia (DABC) are calling on all hospitals in every province and territory in Canada to immediately revise their policies designating “essential” supports/visitors to include personal support workers, healthcare aides and family members who can assist people with disabilities in communicating with healthcare providers.

This call to expand the definition of “essential” supports/visitors to reflect the support needs of people with disabilities comes after the death of Ariis Knight, who had cerebral palsy and communicated with her family and support workers through her eyes and facial expressions. Ms. Knight was admitted to Peace Arch Hospital in White Rock on April 15 with symptoms of congestion, fever and vomiting, but did not have COVID-19.  Her support staff were not permitted access due to restrictions put in place during the pandemic. Not long after being admitted, Knight was put on end-of-life care, and died days later. She was 40 years old.

“Ariis Knight died isolated, utterly alone, and, most chillingly of all, silenced,” said Dr. Heidi Janz, Chair of CCD’s Ending-of-Life Ethics Committee, who is also a member of the federal government’s COVID-19  and Disability Advisory Group. “No one gave her the means to communicate with her family or her medical team. Her basic rights as a human being were violated.”

Dr Natalie Spagnuolo, a member of CCD’s Social Policy Committee, agrees. “While it is true that hospital departments have the authority to grant visitor exemptions on a case by case basis and at their own discretion, this does not guarantee equitable access to health care for patients who rely on human supports in areas such as communication and decision-making – including many individuals with intellectual disabilities. These individuals need to be assured that they will not be separated from their support person upon admission.”

Pat Danforth, of DABC, underscores the urgent need for a change in hospital visitation policy. “Family and support teams can provide critical information, communication support, and decision-making support and comfort when people with disabilities are hospitalized. They should be seen as not just visitors, but essential partners in care.”

The groups are calling on Canada’s Minister of Health, Patti Haidu, to work with her provincial counterparts to ensure that the policies designating “essential” visitors/supports are immediately revised to include personal support workers, healthcare aides and family members who can assist people with disabilities, including many individuals with intellectual disabilities,in communicating with healthcare providers.

“Unless urgent action is taken,” said Janz, “Ariis Knight could end up being just one of hundreds of people with communication disabilities to die alone and silenced.”

FOR FURTHER INFORMATION, CONTACT:
Dr. Heidi Janz – Email : hjanz@ualberta.ca

Chair, CCD Ending-of-Life Ethics Committee

Dr Natalie Spagnuolo – Email : natalie.spagnuolo@gmail.com

CCD Social Policy Committee

April D’Aubin – Email: april@ccdonline.ca april@ccdonline.ca

Research Analyst

Thoughts About Ariis Knight and a Call to Step Up

Comments Off on Thoughts About Ariis Knight and a Call to Step Up

Full transcript:

Hi folks. It’s been a pretty emotional afternoon for us at DisabilityPride.net, for myself and Mary. This afternoon we learned of the death of Ariis Knight, who had cerebral palsy, and actually, Ariis had to go to emerge and did not get the medical treatment she needed or deserved and consequently, she died.

A big part of what happened, once again, was because she had cerebral palsy. There was a probably an attitude of, indirectly believing that her life was less valuable than someone who does not have CP. Unfortunately, ever since Robert Latimer murdered, and yes, I mean murdered. I use that word deliberately because that’s actually what it was. He murdered his disabled daughter Tracy, who had CP and ever since that, I find that the media has a habit of always, almost always, linking CP with intellectual disability, which is actually not common at all. I wish with all my heart that the media and others would stop doing that. Because the truth is, a  lot of people who have cerebral palsy are actually very intelligent and our lives are as valuable as anyone else’s.

What happened when Ariis went to emerge, she was not allowed to have someone with her to help her to communicate, which is another problem. Often people, whether it be doctors, nurses, bus drivers, people assume they cannot understand the person and as I always say, whether you believe you can or you believe you can’t, you’re probably right. It’s about attitude, it’s about recognizing the value of a person who has CP. It’s about recognizing their contributions to the world. It’s about realizing that they have friends, family, people who love them, people they teach and they assume, as well as those who would *presume it’s a two-way street.

This attitude of assuming that somebody who has cerebral palsy also has an intellectual disability has to stop. It has to stop. As soon as possible, because obviously, lives are at stake. Ariis lost her life because nobody gave her the opportunity to adequately communicate her needs, to communicate what was wrong, to communicate her fears. That’s something I understand very well because I know how frustrating and humiliating it is when whenever people think I have a comprehension problem. I don’t but yet, at times, I will get on a city bus and the bus driver will say “do you know your stop?”

What an outrageously stupid question. “Do you know your stop?” Part of me always wants to say “nah, I just thought I would get on here and let you figure out where I ‘m going.”

But honestly, even if I said that, 9 out of 10 times the driver would not bother to listen long enough to really get my sarcasm. Another thing Mary and I were talking about, if it was someone else in ariis’s situation, if it was a deaf person, if it was someone new to our country, they would almost certainly be allowed to have an interpreter or someone with them. Why was Ariis not allowed this? Why was the person she chose not allowed to be with her? Yes, I know Covid-19 is happening, and that’s scary enough all by itself but when you’re in the situation that Ariis was in, not being allowed to have someone to help you, in the last moments of your life…

I’m sorry, that is not acceptable. That is not. It’s just unspeakable. Something needs to change. So, our way of honoring Ariis at DisabilityPride.net is to make this video and try to tell as many people as we can this should never ever ever have happened. This is not ok. And this needs to be addressed by government, by medical professionals, by everyone, churches, clergy, teachers. C’mon people, it’s 2020. Let’s get a grip. Let’s respect every human life. Whether you knew Ariis or not, I didn’t know Ariis, but I know we have lost something that we should never have lost.

So, please just, remember her and next time, let’s not have this happen again. Sadly I know it will, but it shouldn’t. Let’s try not to have it happen. Thank you.

Nova Scotia Grieves

Comments Off on Nova Scotia Grieves


DisabilityPride.net would like to express our deepest condolences to all of the people impacted by the senseless acts of violence in northern Nova Scotia that occurred this past weekend. We watched something incomprehensible unfold in our own backyard and it’s just starting to sink in now how deeply this has impacted us and our community.

As I’m sure everyone is aware, many people lost their lives this past Saturday night and into Sunday morning. Even though the details, including the number of victims, are still unclear, what is clear is that the people of our beloved Nova Scotia have experienced a deeply traumatic, heart-breaking event that will forever change our lives.

This occurred while we are already in the midst of an on-going global pandemic which was changing our lives and causing deep uncertainly and pain. We also want to express our condolences to victims of Covid-19, victims of car accidents, domestic violence, cancer, and anyone who has lost a loved one to any cause in the past weeks.

Humanity is a resilient group. We have a wonderful ability to take pain, trauma and uncertainty and turn it into art, love and kindness. All life is precious, no life is a mistake. We tend to lose sight of the “smaller tragedies” when faced with larger ones, but every loss of life is significant and worthy of reflection.