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COVID-19 Blog #3

Going Beyond Tech

A few weeks ago, which in the days of COVID feels like months ago, I wrote a blog called #TimeForTech. My inspiration was increased restrictions at my sister’s group home along with closure of the program she attended every day, as well as other community activities. In this blog I discussed our need to help make technology more accessible to people with developmental disabilities. It didn’t seem right to me that we have come up with all of these great ways of connecting with one another, learning up-to-date information, being entertained, and passing the time but that they may not be accessible to my sister or her peers.

I have learned a thing or two since then. Spending time talking with people with developmental disabilities, family members, and staff, I am not so sure anymore that #TimeForTech is enough.

It is not that easy to learn to use technology when you have never done so before. It is especially hard to do so when you don’t have the luxury of someone sitting right beside you to teach you. True, you could get virtual support but only if you know how to tap into that sort of support in the first place. Not only is it not easy, it might be costly or even impossible to afford, and it might be incredibly frustrating or demoralizing when it doesn’t work.

I’ve come to understand that while technology is one way to access what you need, it doesn’t always meet your needs and maybe you need something different.

#TimeForTalk

The H-CARDD team has been holding a number of events recently, recognizing that there is so little out there for people with developmental disabilities and their families.  We wanted to be as accessible as possible so we designed some activities anyone could participate in: Mindfulness Mondays, Tune in Tuesdays, What’s Up Wednesdays and Fit Fridays. Each activity requires access to technology and almost all of them have been designed to support a large group of people, where event organizers could talk and participants could listen, watch, and type comments to be shared with the group.

I think these events have been helpful but their very structure can mute the voices of the people who need spaces to talk. Not everyone participating can type or read. Part of what helps, even if the connection is only virtual, is seeing themselves joined with other people, feeling a part of something bigger and having their say.

Some people, who have figured out the Tech piece, are loving interactive small group activities using videoconferencing software. But these meetings are not for everyone. Some people with disabilities, just like those of us without disabilities, are sick of looking at their small screens. They prefer to use the phone.  They may be seeking a one-to-one conversation as opposed to a large meeting where they can’t get a word in.

What more do we need to do to make sure that people who need to talk about what is happening to them and crave contact with other people, have that time to talk, about serious matters and light hearted topics?

 

#TimeForTruth

I am learning that people with developmental disabilities, like everyone, desperately want information about what is happening, why it is happening and what to expect next. But they want their questions answered in a way that they understand. In some jurisdictions, it is mandated that information be provided in simpler language, with photos to help explain it (called Easy Read in the UK and Easy English in Australia). Some Easy Read versions of information have been developed in Canada, but not as part of standard government messaging, not in both languages, and not every time. Another problem is thateven when Easy Read information is available (for examples see our hcarddcovid.com page), often it is only made available online,  requiring Tech, which as discussed above, is not used by everyone. I think we have created some great documents and videos but they aren’t being seen because some people need someone to talk them through what is there. I read recently about how in Israel the daily government briefing is given in Hebrew and in sign language but, recognizing that not everyone can understand what is being said, they also provide a plain language version of the same information to listen to. People do not have to look very hard to get their truth. It is there for everyone to see and hear, at same time each day. Without Truth being made accessible to all, people create their own truths, watching videos posted online or listening to what others tell them, which may be inaccurate. During COVID-19, not knowing the truth may be a matter of life and death.

We are trying to tackle this together with People First of Ontario, ARCH Respecting Rights, and CAMH, offering a weekly session where we try to answer questions honestly and simply about health care and human rights during COVID. We had our first session this week. It is a start, but we are still too reliant on Tech and not allowing enough Talk. You see, we have so many questions to answer that there isn’t enough time to give Truth and allow for Talk at the same time. We need smaller groups to make this happen well, and we need more people to help facilitate these conversations in every community. We also need help to get the Tech to work right for everyone, and creative solutions for when it does not. It may be a simple as a phone line people can call to ask their questions and get their answers. Or a mailing of information that has photos and simple words, that someone can later read to them on the phone if they can’t read it themselves.

#TimeForTenderness

Whatever it is that we offer, we need to be fully present in our time with people with developmental disabilities and we need to offer our care and support with tenderness and compassion. It is scary not to be able to help with quick fixes to problems right now.  But that doesn’t mean we can’t be helpful. In the last few weeks, I have been reminded again and again that how we interact is as important as what we do. In a time when people with developmental disabilities and their loved ones feel invisible and sometimes abandoned, they need to feel like people care.

#TimeForTeams

The only way we can give all people - people with developmental disabilities along with other marginalized groups - the supports they need to get through this pandemic, is for us to work together. We need to team up to facilitate tech, talk and truth. We need to be helping each other, putting our heads together, innovating, pivoting.

I don’t want us to come together as teams only when we hear about a tragedy, when there is a desperate crisis or call for help like what occurred this past weekend at Participation House. We need to be working together now, to better support people with developmental disabilities around us - our neighbours, our friends, our families, our grocery store clerk or greeter - people who were disadvantaged before this started and risk even further exclusion the longer this continues.

Who leads these teams? Does it start with the family doctor? The case manager? A concerned neighbor or friend? Maybe that doesn’t matter. We don’t have time to figure out a process that is perfect for each and every situation. But what does matter is that we all take the initiative to reach out and bring people together.