Dana Lawlor

Hello. In this episode of the DPSS podcast, we will be talking about disabilities. Did you know that December 3rd is the International Day of Persons with Disabilities? But what do we mean when we say disability? And how can the environment around someone with a disability make it harder or easier for them to go through their day? This episode may help to give you some answers to these questions and maybe a different way of seeing disabilities.

Sophie-Anne Scherrer

Waachiyaa, I’m Sophie-Anne Scherrer, Occupational Therapist.

Dana Lawlor

My name is Dana Lawlor I’m a Speech Language Pathologist.

Sophie-Anne Scherrer

And we both work on the disability program Specialized Services or DPSS, of the Cree Board of Health and Social Services of James Bay. In today’s episode, we’re talking about Disabilities. So Dana, have you ever thought about how it would be like to have trouble, let’s say with seeing with your eyes how it would feel waking up in the morning.

Getting out of your bed like trying to use the other senses and trying to touch, feel the floor under your feet, touching to find your clothes and maybe listening to see where the other people in your house are at the moment. And so this requires adaptation.

Dana Lawlor

Absolutely. I have thought about that. And I think because we both work with people who have disabilities, it’s something that we maybe think about a bit more than other people. But I have thought about also what it would be like to have difficulty hearing and watching. Some people around me have difficulty with their sense of hearing and what it’s like for them to be around the dinner table with us as a family and having to use other, other ways in their environment, picking up on facial cues and reading lips to be able to grasp the conversations and everything that’s going on. It’s challenging.

Sophie-Anne Scherrer

Mm hmm. Yeah, it is challenging. And people find new ways of going through their days and they develop new skills to be able to deal with that. And have you ever thought about how your life how your daily life would change if you had a part of your body that was paralyzed, for example, or that could not move, and if you needed to use a walker or a wheelchair to get around.

So you were saying as an O.T. and S.L.P. We are thinking about that a bit more. And actually, when I was an O.T. student, I had to get around in a wheelchair and learn how to use a wheelchair and also to try to prepare a meal with only my left hand. And I’m right handed. So I had to figure those things out a little bit, not as much as people who are doing it on their daily life.

They are the experts, but I had to try to figure it out. And indeed that’s challenging when you’re not used to do it. And in terms of the wheelchair, I had to get around downtown Montreal in a wheelchair and I had to go in to yeah, that was that was challenging. I had to go into a shopping mall and get to the second floor.

And actually I was relieved because there was an elevator there that I could use to get to that side. The second floor. So I thought, okay, great, I can do it. And then I see the elevator far away and then I move forward towards it. And then there’s a set of stairs like there was four steps leading to the elevator, so I couldn’t do it, I couldn’t get there.

So these are challenges that people using wheelchairs may face every day.

Dana Lawlor

Yeah.

Sophie-Anne Scherrer

Not just in Montreal downtown, but everywhere in community as well.

Dana Lawlor

Yeah. Wow. Yeah, that those are a lot of challenges and people need to really be very resilient because the challenges can be everywhere. Yeah, I’ve often I’ve thought also about what it would be to have some like sensory processing difficulties or what it would be like to be overwhelmed by noises and lights and movement around me. And you’re speaking of a disability that’s very physical and we can see, but there’s lots of disabilities where people you can’t see, you can’t see their disabilities.

We’ll talk a bit more about it, but I’ve thought about that too. And there are lots of different challenges and they might look different depending on on the person.

Sophie-Anne Scherrer

Yeah, you have a very good point there. There are people going on with their day every day with challenges similar to the ones we just talked about and to different challenges like these ones. Some of them manage to do everything that’s important for them. They manage to interact with their families, go to work, gather around their community, in their houses, despite having those difficulties.

But there’s other people who have more difficulties with some parts of those daily life tasks or all of the tasks they have to do in their day. So disabilities can look very different from one person to the other. And sometimes, as you mentioned, some disabilities are visible and some you don’t see them. Sometimes you can notice someone’s disability because it’s visible.

They’re using a wheelchair or anything else, but there’s some people you may never be aware of the challenges that they face because of their invisible disability. So disabilities have many faces.

Dana Lawlor

Mhm. Yeah, absolutely. And I think as an occupational therapist and a speech therapist we’ve, we’ve seen the different faces. But let’s back up for a second and just what do we mean when we’re talking about a disability, what does disability mean.

Sophie-Anne Scherrer

So yeah indeed Dana, that’s a that’s a big topic. There are different ways to talk about disabilities. There’s a few different definitions around this. It can become quite complicated and confusing. So in this podcast we will focus on just one way to explain that will help us understand how someone living with a disability can be affected in their life by what’s around them and what role the community plays in that.

So let’s start here and we will dig deeper into different ideas right after to help everyone understand. So, so please bear with me. We will look mainly a three words the words impairment, environment and disability. In a nutshell, and impairment is about the person. You also have the environment which helps or limits what the person can do. Then we put those two things together and then we may end up with what we call a disability.

All right. So let’s take this back from the top and dig a bit more into those ideas. And after we will give some examples to help understand more so let’s go back to the first word. The word impairment. So an impairment is when someone has limitations or difficulties in their body or mind, and this can happen because of an illness or an injury.

It could also be something that someone is born with. Dana, can you help me with giving us some examples, please?

Dana Lawlor

Yeah. So these limitations, I mean, they can happen with a variety of skills, right? So they could be the physical or motor impairment and like as you describe in a wheelchair, so someone who is able to, how someone is able to use control and move their body, such as with cerebral palsy or in how a particular sense is able to work.

Well, like for someone who has a hearing loss or difficulties, seeing limitations can also happen with how someone is able to use their brain, so how they act and maybe impact how they learn. So you may hear people speak of an intellectual impairment and limitations can happen also with communication so affecting someone’s ability to understand words and messages around them.

Or it may be difficult to speak or to express themselves. And so these impairments can happen alone or they can happen together. So someone with an impairment in how they move and control their body, like in the case of cerebral palsy, they may also have a hard time expressing themselves or speaking. And these impairments all have different names.

And these names are what we often call a diagnosis. So impairments are not always noticeable. Like we mentioned before, some of them are invisible and actually many of them are invisible. When you think of fetal alcohol spectrum disorder. So FASD or ADHD or language disorders, we can’t see those. So we call them invisible.

Sophie-Anne Scherrer

And so we mentioned that the second word we were covering was environment. Could you explain what we mean by environment?

Dana Lawlor

Yeah, I mean, yeah. And definitely jump in you and if you feel like I’m missing something. But I think environment is one of the simplest ways is what is going on around us. So it’s the people that we interact with and their perceptions and their judgments towards us. It’s the land, it’s the animals. It’s the way houses, streets and other buildings in a community are easy to access or are not easy to access.

It’s also about the services that are available to support us when we need them. And even the rules and the laws that make sure that no one is excluded or experiences, discrimination, the environment can help us or or it can limit what we do, whether or not we have an impairment. So we all deal with those situations.

So maybe, maybe the best way to do it is to give you an example as so let’s say if I go into a restaurant and the menu is in a language that I don’t understand, let’s say it’s Italian and the staff only speaks Italian as well. I probably won’t be able to order. And on top of it, let’s say this, the staff starts to laugh at me because I don’t understand.

And I probably would just leave honestly and go back home and I wouldn’t have my dinner there and I wouldn’t go back. So the environment in that case stopped me from doing what I wanted to do.

Sophie-Anne Scherrer

Yeah, I think this is. This is a good example. And if I take it on the reverse side, if in the same situation in the restaurant, if the menu that’s in Italian was showing clear images of the plate, or if the person that I’m going to dinner with can speak Italian and they can translate for me, then I would be able to order and go on with my evening.

So in that case, the environment would help me do what I want to do.

Dana Lawlor

Yeah, that’s a great way to spin it. Right. So the environment can be there to help or the environment can be like a barrier and it depends on the situation. And so let’s see if we can just summarize just for a second again, because I know what’s a lot of a lot of different words that we’re throwing out there.

So if we put together an impairment, so that’s when someone has difficulties with their body or their mind and the environment that they live in that limits what they can do. That’s when we say someone would have a disability or that there is a disability.

Sophie-Anne Scherrer

Yeah, that’s it. You got it, Dana. And someone can be using a wheelchair or have autism, for example, or any other impairments, and still go on with their life and do what they need to do. It depends on how people around them are helping, how their house and their community allows them to go around safely, how community members are seeing them or judging or not.

Sophie-Anne Scherrer

If they are welcomed into community events, what services are available to help them out and if they have learned some tricks to deal with all the situations in their life. So for example, let’s say someone with autism really likes bingo and the like social events and would like to go to a live bingo in their community. That situation can be very, very stressful for someone with autism.

And because there is a lot of noise, there’s a lot of people moving around and that becomes overwhelming. So maybe they would be able to go into that bingo if they were wearing something on their ears, earmuffs to lower the sound that they hear. And maybe if there was another room in the same building where the bingo is taking place, a quiet room is a space where they could go by themselves and just get the stress down when it becomes too overwhelming in the main room.

Maybe then they would be able to participate in the bingo and have a fun evening over there. However, in that same situation, let’s say they were getting to that bingo and the quiet room was locked and no one could find the keys. And then let’s say people were laughing at them because they’re wearing something on their ears. Then they may feel bad.

They may not be able to get their stress level down. So they may have to just quit and go back home and not participate.

Dana Lawlor

Hmm. Those are two different very different scenarios. Right. It could play out very differently depending on on the environment and how the environment was able to help or not help that person. I think about it, too. I think one of the things that we often think about with disability is, is wheelchair, right? And then so we think about what, how that could look differently with a wheelchair.

So let’s say someone who uses a wheelchair would not necessarily feel the impact of the wheelchair as much if their home was what we call adapted. So if if they have a ramp outside of their house and if there was someone there to help them move and push up that ramp, and if the door frames in their house are big enough for them to be able to move through, and if they have a way to safely get into the back and navigate throughout their house, they wouldn’t feel the impact as much as well.

If there was an adaptive bus and if it was working and able to bring them to where they want it to go. And if events were organized with them in mind and their wheelchair in mind, and it could look on the flip side, it could look very different too right if all those things are not in place. You can imagine the challenges of trying to do your everyday things.

Sophie-Anne Scherrer

Yeah, yeah. Totally. And we can also add on that that if they had learned how to go around in a wheelchair because that’s something you need to learn it’s driving skills and it’s how do you turn around small angles like in tight space, how do you go back and forth? So these are skills that you need to be learning and it takes practice and it takes someone maybe to show you.

Sometimes people will learn them by themselves, but often times you need some help to learn about that. So that’s also how do you manage with this.

Dana Lawlor

And that’s a good point. That’s a really good point.

Sophie-Anne Scherrer

And if we go, let’s look at other terms that we hear often in terms of disabilities, we often hear the term special needs. Can you tell us what it means?

Dana Lawlor

Yeah. So special needs is just another way of saying disability. And so right now we tend to use the term disability more and more. You’re probably hearing it more and more so we can say Mary has a disability or that Mary is a person with a disability. And we tend not to say that Mary is disabled, but that’s different because Mary is likely to be very able in many ways when given the support she needs and the environment is there to help her.

Sophie-Anne Scherrer

Yeah, that’s important to make the difference between the challenge, the difficulty the person has with the disability and the person themself. It’s a good point.

Dana Lawlor

Yeah. Yeah. And so along the same idea of terms, I’ve often heard the term handicap. And how would you, what would you say about that, Sophie-Anne?

Sophie-Anne Scherrer

Yeah. So this term is actually much debated. So in a nutshell it talks more about the consequences, the disadvantages of someone when they are not able to participate in their community as much as other people.

Dana Lawlor

Okay, I’m glad we’re talking about this because there’s a lot of different terms and a lot of different concepts out there. And so I’m hoping that talking about this will be helpful for those of you who are listening. So we mentioned before that many of the problems someone can have with their body or their mind have different names.

And we call this a diagnosis. So if two people have the same diagnosis, can we expect them to have the same difficulties in their life?

Sophie-Anne Scherrer

No. And that’s the really important question. Everyone is different. First, the first thing is that someone can have more than one problem in their body or their mind, and this can make it more difficult for them to overcome their difficulties. But the most important thing is that a diagnosis, as we just mentioned, doesn’t describe who a person is.

It only says this part of Mary’s body or mind has this type of problem. I don’t know who Mary is from that information. Everyone with or without a diagnosis has their own personality and strengths, and you can never compare two people and expect the same from them. We all have our differences in our personalities, our abilities and our interests.

And this is what brings beauty and makes the world an interesting place. So let’s take an example of someone that many people know in Eeyou Istchee. Matthew Aiiserrough. He has one leg amputated. But if I tell you this about him, I’m absolutely not describing who he is, which roles he’s taking in his life. And I would much rather describe Matthew as a singer, music composer who moves around the stage like no one else.

He’s also a very active member of his community, as well as a father and a husband. And you see, I don’t know Matthew personally, so I’m only describing the roles that I can see. But people who know him better or himself would be able to tell you more about his own personality, his character, the things he enjoys. And so the amputation is really small in describing who he is.

Dana Lawlor

Yeah, people are so much more than their disability, that’s for sure. That’s it. Or the challenges that they face. And so it me think of another example. And if we look at disabilities that are related to the brain, it makes me think of Temple Grandin and she was diagnosed with autism spectrum disorder, ASD when she was an adult.

So she’s now in her seventies and she’s lived a very full life. She has a doctorate in animal science, which is the highest level of education. And she also she gives presentations around the world on autism to help us better understand ASD. And so she’s another example of being so much more than that diagnosis.

Sophie-Anne Scherrer

Yeah. Yeah. And she’s quite famous as you said and there’s even a movie on her if people want to know more a bit about her.

Dana Lawlor

Yeah. She’s super interesting and she’s great to listen to.

Sophie-Anne Scherrer

Yeah. And Dana, can you tell us who has a disability?

Dana Lawlor

So we looked into it a little bit more and we found that about 15% of all people in the world have a disability that can create very important difficulties in their life. So if, you know, let’s just say if you knew six people, think about six people, one of them may be living with a disability. That’s the correlation to the 15%.

Sophie-Anne Scherrer

That’s a lot of people.

Dana Lawlor

Yeah it is. And listen, we all have difficulties, big or small, in some aspect of our bodies and our lives. And these difficulties can grow bigger or smaller at different times in our life. So we found an interesting quote from the World Health Organization that says “Almost everyone will have a temporary or permanent impairment at some point in life.”

Sophie-Anne Scherrer

Hmm. Yeah. Actually, what I’m getting from those readings and those discussions we had is that we can all be affected by this topic one way or another, either because we have a disability ourselves at some point in our lives, or because someone else in our family has a disability.

Dana Lawlor

Yeah, absolutely. So how can we help people with disabilities take part in in our communities? Do you have some suggestions for that?

Sophie-Anne Scherrer

Yeah, I think the first thing is to start with awareness and having different perspectives on it. And so we tend to focus on what we and what other people cannot do. The disability and you know

It would be good if we could focus more on what we can do, the ability. It’s a lot more helpful, it’s a lot more productive to look at what we can do. And even for us, we’re always looking at ok, what am I able to do? And that’s what we’re putting forward. And that’s what we’re building our lives on.

Sophie-Anne Scherrer

And if I think just a basic, basic example of making a sandwich, if I want to help someone who has a paralysis, they can only use one hand, for example. And it’s hard to make a sandwich with only one hand, but they still can do part of that sandwich. And if I wanted to go fast, I maybe I would just do it for them and think, okay, it’s it’s just one less thing for them to focus on.

I will do it and give it to them. But then I’m not helping them, build their skills because there are ways to learn how to do this with one hand. And maybe at this moment they’re not able to open the meat container with one hand, but maybe they’re able to put the bread in the toaster and they’re able to put butter on their bread.

And as we go, maybe in a few weeks from then, they may find tricks to be able to open the meat container by themselves so I can support them and do what’s difficult at the moment, but still help them use what they have, what they’re able to do, and develop even more.

Dana Lawlor

That makes me wonder about like, how do you know? Like, how do you know what a person is able to do and what help they might need and I guess one of the things that you could do is check in with the person or their caregiver first and find out what does help look like and and how much help is really helpful.

I know that sometimes not getting enough help can obviously limit somewhat what someone can do, but at times too too much help can also be a problem. It can stop people from developing developing their skills. Right, as you mentioned. And it can even it stops them from potentially believing in themselves and believing that they can do it. And so try not as much as possible to assume what is really helpful.

And its just to ask for it and ask first. Recently I saw which recently I saw an elderly couple getting out of their car at the grocery store, in the parking lot of the grocery store. And the husband was helping his wife get out of the car safely and he was trying to manage her walker as well.

And and he himself was having difficulties moving around. And so I just went up to them and I asked, is there some way that I can help? And I ended up helping them get out of the car and into the store. But I think it can be as simple as that. And sometimes we don’t even know if we should say something or what we should say.

And I don’t it could be “is there some way that I can help?”

Sophie-Anne Scherrer

Yeah. And sometimes we may be shy to ask. We may want to just jump in and do a task for people. But yeah, just using that simple sentence and asking will give them the help they need and they want. Sometimes they may not feel like they need help too. So it’s important for them to tell you what they need.

Dana Lawlor

Yeah. And it gives them the opportunity to say no thank you.

Sophie-Anne Scherrer

That’s it. And your example makes me, I’m thinking about the husband of that couple who was helping his wife and there’s people with disabilities who are receiving a lot of help from their families to get over their day. And the people who are helping them like this husband, they’re putting a lot of energy and time in helping.

And that can become quite difficult. So it’s important to check in with the families of people with disabilities and see how are they doing. Often those caregivers feel alone and very tired, so they may need support and sometimes like they might not want to ask for it. And sometimes, you know, when you’re really tired, you don’t even know.

You can’t think of what you need. Actually, you don’t even know what help you need, but you know you need something. So there’s a few examples of what we can do when we’re around. People who are caregivers, if it’s our neighbor, if it’s our family members or anyone we know, we could just prepare a meal for them and bring it to them.

We could think the person with the disability out for an activity, so it gives the caregiver a chance to do something else. They need to do without having to worry about their loved one. You could offer to babysit their other children or you can just listen to the caregiver. Sometimes you just need to talk about what they’re going through.

Dana Lawlor

Yeah, I think that’s those are really good suggestions. And it can be pretty simple, but it could be really helpful. It makes me think of my sister. I don’t always do a very good job of putting myself in her shoes. She has a son with a disability and sometimes

I forget about that and I forget about how tiring it must be or could be for her. And so I’m often in touch with my sister and I hadn’t spoken to her in several days, which was unusual and I left her a message and she didn’t answer. And I left her another message and she didn’t answer. So I started getting frustrated.

And when we finally spoke, she told me about how tired she is and how that she’s been just consumed with taking care of her son right now, who has a disability and I felt really badly because I didn’t put myself in her shoes. And honestly, I felt a bit ashamed because I started to judge her. And so it was just a reminder for me to just lean in and try to understand what she might be going through.

And I think that’s something that we can give people to is that empathy and trying to understand where they’re coming from and what it might be like for them?

Sophie-Anne Scherrer

Yeah, you’re right. And oftentimes we don’t know what people are going through around us. So.

Dana Lawlor

Yeah, yeah.

Sophie-Anne Scherrer

And speaking of that, who can help in community? Do you have a few examples?

Dana Lawlor

Yeah. I mean, there are services and helpers in every community, so I would encourage you to please contact your local clinic or your CMC to find out more because services can be different from one community to the next and there may be a special needs educator or we call it at SNE, or there may be community workers or an Occupational Therapist, a Physiotherapist, a nurse, doctor, psycho educator, a rehab monitor.

These are all people who could be helpers. So if you have concerns about someone in your life who might be struggling with a disability, please contact your local clinic for support.

Sophie-Anne Scherrer

And there are also other organizations in communities that support and can help make their activities open and available to people with disabilities to know more. Because it’s different in each community, you can contact your band office and the different associations in your community and you’ll have more information on what’s available. There are some examples of programs or services that are adapting what they’re doing to people with disabilities.

So here are just a few. There’s the youth center in Mistissini who is working on making their services more accessible to youth with disabilities. So they’re working on helping them join the after school activities by creating a different environment where you know when I was talking earlier on about the person with autism who would like to attend a bingo and how it can become overwhelming to have the noises the movement around so they’re creating space that where they can go and calm down as an example they’re creating different spaces but that’s one of them.

There is, again in Mistissini, there’s a dental clinic who is adapting their practices. Similarly, it’s also an example of a place where people with autism or other disabilities may feel overwhelmed. We all feel overwhelmed at the dentist, but this is even more for different people. And so the noises, the feeling, the big lights can be a lot to deal with, especially for children with autism.

So they are working on changing the way they’re doing things to make sure it feels for them Eastmain is working on offering more respite to caregivers and there is Whapma and other communities who had started to support groups for parents of children with disabilities. So there’s a lot of beautiful examples out there in the US of different ways to adapt services or to offer some services to the families and people with disabilities that can be done outside of the health system.

Dana Lawlor

Yeah, and I think a big message too is that, I mean those are great examples, but you don’t have to be part of an organization to help others and so help doesn’t just come from health services or from big organizations. It can come from people, from neighbors and, you know, a life can be changed and help outside of the clinic.

And the most lasting differences often happen when the community is allowing for their members to thrive and to really live their full life so a neighbor can help a neighbor or cousin can help a cousin. And like you mentioned before, Sophie-Anne, like, everyone can provide help. It doesn’t have to be big help. It can be something that we might think is quite simple, but could be actually very important for someone.

So some ideas, ideas that we came up with would be maybe to just shovel somebody’s ramp in the winter months when it’s covered in snow so that they can come in and out, like you said, providing some babysitting and making a meal or helping planners find ways so that people with disabilities are able to go to community events and feel comfortable going to community events.

Something that we thought about, too, was becoming a storyteller to children and youth with disabilities. So that can be a fantastic way to stimulate language and share Cree values and Cree stories. Those are just some ideas.

Sophie-Anne Scherrer

Yeah. So the examples we’re giving are to me, they’re saying that we all play a role in opening communities to people who have disabilities and their families. Everyone has gifts to share. And if we continue to look for ways to support and include people with disabilities into the life of communities to make it possible for them to contribute, it can only bring more richness for everyone.

Dana Lawlor

Absolutely. Thank you so much, Sophie-Anne for tackling this big topic. An important topic together today.

Sophie-Anne Scherrer

Thanks to you, Dana. It was a pleasure to do this with you. We hope you enjoyed our episode on disabilities. We are sending out a special mention to all the people who are living with or helping someone with a disability. Thank you. We know and appreciate all the hard work you do.

Dana Lawlor

And DPSS would like to send out a special thank you to Catherine Washipabano for her help in translating parts of this podcast. Thank you to the DPSS working group, Trevor Friesen, Bethany Hartropp, Jessica Jackson-Clement, Charnelle Kapashesit, Michael Lautman, Cynthia Miller-Lautman, Aimee Parsons and Catherine Washipabano, thank you to our editor and producer, Michael Lautman.

And a special thank you to Matthew Iserhoff. For giving us permission to include him in this podcast. And for his kind encouragement, Meegwetch.