Tag: coronavirus

International Day of People with Disabilities – Fighting for Rights in the Post-Covid Era

International Day of People with Disabilities Logo

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In the “After Covid” world everyone has now experienced some type of isolation or barrier to participating in activities. These barriers have always been a daily reality for disabled people but each of us now have a personal understanding of what that means and what it feels like to be unable to do the things that we considered “normal.” We need to take this new understanding and use it to inspire each other to build a world where isolation does not exist and inclusion is second nature.

The fact that the Covid-19 pandemic has had a disproportionate effect on disabled people has been well-documented and frequently discussed. There are numerous statistics about how having a disability resulted in a significantly higher risk of death from a Covid-19 infection and a wide variety of reasons about why that is the case.

An important part of the discussion that I haven’t seen addressed very often outside of disability-centered community conversations is the small ways that disabled people have had to fight for their right to inclusion to be recognized and respected. Changes to make something accessible to everyone are frequently so small they are completely over-looked.

There are so many spaces that are not physically accessible to people with mobility issues, hearing impairment and vision problems. Disabled folks who don’t have mobility issues still encounter non-physical barriers. When most people hear about “accessibility” they almost always assume it’s about the physical world, specifically about doors that open automatically, ramps for mobility issues and bigger toilet stalls.

With the pandemic increasing the need for everyone to be able to access work and community while maintaining physical distance, online spaces have become an integral part of our daily activities. This has allowed for people, including disabled people, to remotely participate in things they may not have otherwise had access to with gathering restrictions and lockdowns in effect.

It has also presented challenges to disabled people who find parts of online life often inaccessible. Accessibility continues to be elusive in a world that is not designed with everyone in mind.

During the pandemic, it has become increasingly clear that the fight for disability rights is more than just ensuring spaces are physically accessible. We have all become intimately familiar with how isolating and damaging it can be to be unable to participate in things we think of as part of daily life. We need to consider that this is how people with disabilities feel on an almost daily basis. Both the physical world and the virtual world have been created in a way the takes a “one-size-fits-all” approach to accessibility but with the vast diversity of bodies “one-size-fits-all” is simply just not true.

When we look at how inaccessible the world can be, it gets overwhelming but if we consider the small changes we can make online and off, the world will become more accessible. It’s important to include a wide variety of people in our accessibility plans for both physical and non-physical spaces. Disabled people continue to fight for the very basic right of being included in society. Accommodation and accessibility are a key factor in inclusion.

How can we start making small changes to make the world, both physical and virtual, more accessible and inclusive? The easiest place to start is to simply observe. Being aware of the world around us, speaking to the people around us, noticing how we and other people interact with the life are an invaluable starting place. This can be difficult online, as the only thing we can “observe” is an inanimate screen most of the time but the online communities we already interact with still function similarly to the offline world. There is almost always a person behind that screen on the other end and if we remember that we will be able to start thinking about how they interact with their online environment. That will lead us to thinking and talking about to make those interactions accessible for and inclusive to everyone.

2020 Reflections

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So, that was a year we’ll never forget, wasn’t it?

2020 was an unexpected rollercoaster and while I am not sorry to see the end of it and I’m eager to move forward and greet 2021 with hope for less chaos, I want to recognize some truly amazing things that 2020 brought us at DisabilityPride.net.

Firstly, Gerianne and I started 2020 off with a new adventure, participating in TeamWork Cooperative’s Self Employment Workshop where I learned just how much Gerianne hates market research and Gerianne and I both learned that there are many ways to go about building a successful business and we have to determine our own definition of successful. We enjoyed getting to know many other entrepreneurs and made a few friends while we were attending the workshops. Unsurprisingly, the workshop was cancelled in mid-March when everything was thrown into lockdown. While Gerianne did not “graduate” from the program we did gain valuable experience there and are incredibly grateful to TeamWork for giving us the opportunity to participate.

As we entered lockdown and people were required to isolate for a variety of reasons, our staffing pool became fairly shallow. Gerianne and I were together almost all day, almost every day for a fair chunk of March and April due to various isolation and quarantine requirements. This would have probably driven most working relationships into the ground but we managed to flourish as a team. The main part of the reason for this was our ability to get along and communicate very well. We both had bad days, we both had good days. They didn’t always coincide but we were able to work together through them and produce some amazing content and a wide variety of projects.

Gerianne was determined to not sit idle while the world was essentially shut down. She completed and excelled at several courses on online marketing and search engine optimization. We both participated in and completed ARCH Disability Law’s Community Champions stream on the United Nation’s Convention on the Rights of Persons with Disabilities Optional Protocols and how those can be used by disability rights activists in Canada. It was an eye-opening experience that gave us insight into the various avenues for and challenges with defending inclusion and disabled people’s human rights within Canada and around the world.

DisabilityPride.net just finished our first newsletter (check it out if you haven’t seen it!) and we have started to explore video production. We have big ideas and big plans, many of which started forming during this complicated adventure in various stages of lockdown.

Gerianne also began the adventure of diversifying her income opportunities and has been incredibly successful selling vintage and second-hand furniture and décor. We have also collected a number of stories from Gerianne’s customers that we hope to turn into either posts on the blog or a collection of vignettes for the newsletter’s next edition.

Though this year was professionally a success, I would be remiss to not acknowledge the difficulties in the non-professional sphere. I spent a significant length of time away from my children as they were visiting family out-of-province when lockdown began. Gerianne and I spent almost every night I was here with my kids reading us bedtime stories. I am forever grateful to my family, who kept my kids safe, happy and healthy during a time their father and I couldn’t be there with them physically.

Gerianne has been diligent about maintaining the health and safety of herself and her attendants, which means adhering to all guidelines from the Department of Health. As a result, she has been home more often in the last 9 months than she probably has in the last 4 years. She has missed participating in her community, including church, immensely. She has also deeply missed seeing her family and friends.

We have had an unprecedented year. 2020 will be a forever bittersweet time but I am proud to have accomplished so much during a global crisis. If there had to be anyone by my side during such an event, I’m infinitely grateful I had Gerianne (and my family) with me for this adventure.

Launch of the COVID-19 Disability Rights Monitor

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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

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.caapril@ccdonline.ca

Research Analyst

Thoughts About Ariis Knight and a Call to Step Up

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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.