Dec. 8, 2022

Alex Lytwyn: Accessibility Matters, Can I Come In?

Alex Lytwyn: Accessibility Matters, Can I Come In?

Alex Lytwyn is an astonishing person. Alex has Cerebral Palsy and is in a power chair. Listening to Alex is not easy. First it is not easy because Cerebral Palsy, the most common lifelong physical disability, has affected Alex’s speech. He works work really hard to get his words out. You have to listen. And secondly, it is not easy to listen to Alex because when he shares his story, it is unacceptable how society has treated him.


NOTE: During my conversation with Alex Lytwyn, I mentioned that he had one brother. In fact Alex has two brothers.

Growing up being different made Alex feel inadequate. He tried to hide behind his disability. That all changed when Alex understood that if people had an issue with his disability, it was their problem. Not his. Alex is very open with his life as an advocate for disabled people. He shares the story of Fanta, his service guide dog who became his soul mate and made him feel like an abled body person. Since Fanta passed away, Alex is dealing with some challenging mental issues but he says ” With Fanta's memory, I will build myself back up.

Alex is not letting CP get him down. Alex is the video coach for the Parkland Rangers Hockey Club. He is using his motivational skills to serve as an Ambassador for Manitoba Possible. He is using his entrepreneurial skills and started his own business Will Power Media. Alex is a prolific writer and has written numerous stories for CBC First Person. He has been interviewed by countless news organizations.

Connect with Alex on Social Media:

Facebook, https://www.facebook.com/alex.lytwyn.79

Twitter: https://twitter.com/AlexLytwyn

Instagram: https://www.instagram.com/alexlytwyn

TikTok: https://www.tiktok.com/@alexlytwyn

And please give this a solid Subscribe on YouTube.

https://www.youtube.com/channel/UCQ1wMWxmDBtzcyhbfrOAt-A

Transcript

This podcast was recorded on the ancestral lands on Treaty One territory, the traditional territory of the Anishnawbe, Cree, Oji Cree, Dakota, and the Dene peoples, and on the homeland of the Métis nation.

This is Humans on Rights, a podcast advocating for the education of human rights. Here's your host, Stuart Murray.

International Day of persons with disabilities is December three that was declared as such by the United Nations General Assembly.

My goal was to try to reach out to an educator and advocate who could talk about the importance of international day of persons with disabilities and I have been blessed and I mean blessed to have been able to make the acquaintance of Alex Litwin.

So Alex, I'm going to welcome you to humans on rights and then I'm gonna talk a little bit about you before we get into our conversation but welcome to humans on rights.

So Alex Litwin has cerebral palsy and in a power chair, Alex is from Winnipeg oh sis!

Which for those that need a bit of geography lesson here in Manitoba, it's about four hours north of Winnipeg Alex has a business administration and applied counseling certificate.

He's a video coach for the under 18 triple A Parkland rangers hockey club.

He is an ambassador for Manitoba possible and we're gonna get into talking about that role Alex and of course he says on your, this is on your bio Alex that you're the host of the social media sensation called Can I come in.

So that's got to be pretty amazing, we'll talk about that and you're an entrepreneur, you started your own business, willpower media, so we got lots and lots to cover but I just want to and I'll make sure that everybody Alex gets a chance to go to your website to see some of these things because you're very active on social media and I just saw a video of you Alex scaling the side of a skyscraper, I think it's the Manitoba hydro building, you were on a platform in your power chair going down the side of that building, what was that, like why I I didn't because it was And and that day we raised almost $70,000 but for them it was amazing, you know it wasn't too bad during the day you know I was interviews you know but then it was it was like here we go, I was I was I it was you know I was I was I remember looking up this guy you know what, yeah I'm here but this one I am free yeah but I was and so I do this time and as I went went down I realized you don't want no matter what gets in the way it doesn't matter, we always have a way to lose that you know it was it was let me got me you know I come home, I go into public and people say hey you guy, I would never do that, I was yeah you know I love you, yeah I can tell I am but you know what I am over here, my fear help.

Yeah, I am, this is so yeah, that's a that's an amazing story, Alex, thank you for sharing, raising money for Manitoba possible, maybe being slightly afraid but overcoming that fear, it's something that you have done constantly your life, so I really appreciate you sharing that.

Thank you so much.

I just want to say again, it's one of these things Alex that your ability and your pride in in advocating for not only people with cerebral palsy, but clearly with people that have disability, you are a champion in in so many ways.

So let's let's see, talk a little bit about that Alex.

One of the things that you've done is you've become a video coach for the under 18 Triple A Parkland rangers hockey club, you're obviously a huge hockey fan.

How did you get involved in becoming a hockey fan?

Every word over evening.

D my belief that my team and I don't want to be involved in the game, so I wanted to do one.

So one day I leave and it was and what they do and they were nice enough that I went to the and I three years.

So Alex I know that you indicated that you're a big hockey fan, you watch hockey all the time and that you just dropped in there that you're a Toronto Maple Leaf fan, so I'm not sure if you're a popular in and around the place of Winnipeg.

Oh, sis, I will uh I will just confess to you Alex that I grew up in the original six and so I don't want to say this too loudly here in Winnipeg.

But yes, I true have an affinity for the Toronto Maple Leafs.

No, Okay, so here's the thing, you're 37 years old, I'm a little older than Alex, so you have never seen the Toronto Maple Leafs win the Stanley cup?

I have, I think I was about seven, we will see for sure, so Alex that's a fast tastic way to to really sort of start our conversation about some of the things that you have embraced, understanding that at the early stages of your life having cerebral palsy was was difficult and challenging.

I remember the first day I was disabled I was saying and my brother was why me?

Yeah, I don't want anything going, I fell through the floor, it was 94 that I knew my life wasn't gonna be, the same everything was a little bit hard, but at the same time I knew I was here for the reason doesn't mean it has to be bad, so and Alex, I look at the fact that you had a younger brother and reading from your mother Sherry who talked about understanding that there is a difference between you and your brother, but as you say that you knew all along that you were going to have some challenges and at that point it's pretty easy to say that you have come through a very challenging younger side of your life Alex and have decided that even though you knew your life was gonna be a bit more difficult and challenging you decided that you were going to meet that challenge head on and make a massive contribution which you continue to do.

I and they were they were everything he was, we was Yeah, absolutely, for sure, while you're taking a moment Alex, let me just let our listeners know that having grown up with a younger brother in your household, it has never affected or stopped you from becoming the person that you are today and when we look at the fact that you have not only come through a very, very difficult time, which will we can talk about, but the fact that you've been able to become through your being a disability advocate is what you've done and it's something you take tremendous pride in.

When did you decide Alex that you were going to be somebody who was saying, look I am a human, I may have some issues that are different than others, but I am going to make a contribution to society and be a leader, you know, is it I used to be, I used to myself, that doesn't mean nothing, I'm here, I get with my my life my way if someone me because money, that's not my problem.

She's doing.

I used to worry about where people think how we used to give me.

We used to think of me and used to drive recently at and try to be already for me and my it was you know what?

I'm here and me.

There you go.

I I wonder if is a positivity and there's some people that the hardest challenge with the reward.

Well and Alex, I would say that again to take the attitude that you are, who you are and if people have issues it's their problem, not yours, you're very very clear and and I'm going to just say as you and I are chatting, I will post on the media notes that are part of this podcast, Alex some of the stuff you've written like the some of you are a journalist, you've written things for Cbc, you're a freelance journalist, I will post some of that on this website so they can read it because I was fascinated by your story around trying to go into a major supermarket and your challenge of trying to open the door.

But I I want to just come into that Alex and talk about the importance of somebody that has come into your life and unfortunately is no longer.

But I want to explore the four years that you had as your companion, your service dog Fanta as you will the opening doors to help me get dressed.

Help me too ornery, Its meaning wherever any help us.

Yeah, I it it was for years as he got me so much.

She told me was you know before I used to go to in public I used to go to the store anyway.

I used to use you know whenever I get back and that's no and you know every and she she made me feel everybody and when I will find I wasn't disable.

I didn't do anything.

You could if I needed a drover, didn't work for help if I need something out of this house so I could do was doing two grabs.

You know where she's gone to be very honest with I'm having a mental issues and I have anxiety and I was in love with him wisdom most you know what I'm when I'm having a bad day and I had no weed with me.

We're always here to listen and no matter what I was having and then I feel that whatever she's going it's up to me to find better ways to go and yeah, it's uneasy but I wanted to help people, I want to tell a couple of things, one beds be moving.

Uh come and go and my child.

But if you have a until if you're having or any type of it's okay.

I'll be honest with you Stewart for years.

I have my and I tried to hide I didn't want people to know who I what what I was gonna do because you know I was I was the funny guy.

The huggy goes, you know I did all this stuff, I was so motivating that I didn't want my, he was because but ever since the passing of I haven't even open about my but I wanted to hear this has with the audience there yourself and your story about Fanta having a guide dog become as you say, it's not a pet, it was was a family member.

I mean so close to you and you shared this when we chatted before that if you if you ever needed a hug from having a bad day that Fanta was there to do that for you or things like you know, help you with laundry, open a door, just be there as as really your soul mate.

And it was just with me every open will be open.

You know it's when people with but when I don't know why or how, but I got treated with someone who was red there if he was on me as a human being and I had something I never loving, I hope to never lose and I make a point away goes in my hometown anyway and in the world and I go all over the place but I I really anyone this really it doesn't define us and honestly I've been but we have to realize that we are all human beings.

Yes, we may talk about it, we may not be able to do stuff, We may help your dream doing well, we will we all we have them with, we are and if we do that one day they won't, they won't, they won't see.

But Alex and again, thank you for being so so candid and so open to talk about some of the mental challenges that you are now dealing with with the loss of Fanta.

And I can't help but go back to a comment that you said Alex that before Fanta, when people would look at you, they would see somebody in a power chair, somebody who has a disability and that would be how they would would look at you and and to your point when you were with your your partner in life at that point, Fanta and you would be out in public that they would see you as you know you are, but they would see you as somebody different as a human being, somebody being able to accomplish things.

How is it that you had such a great relationship with Fanta?

Uh she knew me better than and everything we did.

It was just it was new, best friends and you know, the thing is I'm going in public if you wouldn't you know that was but everyone wanted to talk to me and say I open my mouth and I said hi how you doing that, if they didn't understand me, it was if you want to understand me and if if I was having a lovely talking, the conversation was going nowhere, but I don't know when how or why wait when it happened with me, I was home.

Yeah, I I got me, you know man family, it was our only what I was saying and it was just we had this amazing relationship where she would always put me at ease, remember that one time I want to go into town and I got hey offended with me and there's no going, it was golf and I lived in this war town, so there wasn't nobody else and the being sad and nervous and not knowing what was gonna happen, that's she always physical and that's something I never ever well for to have that kind of a relationship Alex with Fanta to know that, you know, as you know, for those of you that they're they're listening Winnipeg, oh sis as you say, it's not a very large place, so you know if you get stuck in a snowbank, it's not that there's a lot of traffic around, so you know to have fan to be in a position to basically assure you everything is fine and to go get help to make sure that your you were kept safe.

I'm just hearing you tell the story Alex and I must tell you I get I get goose bumps because to have that kind of a relationship with an animal that becomes your soulmate and you know, I don't know if you want to say that the language of the dog is barking.

I'm not sure if that's the dogs might not appreciate me saying that.

But you know your language was one that wasn't spoken.

Your language was one that you understood each other before a word was even mentioned and to do something I get and if I need my hat I didn't have to say go get my hat.

I didn't know.

And yeah, just go ahead to have this very you know I mean I know that makes all funny but me and we used to be us enemies.

This tv used to drink the best of me and I used to want to me mr marshall man people uh uh but it wasn't until my early 20s, you guys, what the hell am I doing here?

I don't have I don't have to so I know that but one day I was sitting at the table with a cup of coffee.

Yeah.

He said, okay CB you don't like me, I don't like you.

But together we give me a pretty so how about we try to learn from each other and you get this me And also because my disability has done me so much and one of the things that I am only because of tv is my innocent there.

They do it.

Why I don't want I don't want to try everything through it's difficult.

I have hungrier.

I have been up and down my body.

I talk funny sometimes everything I do is the battle and honestly yeah sometimes when I didn't want to say you know what D.

B.

You win you when I grew up I think no the day today is the day I want to overwhelm that no matter how miserable for me our people and we was me.

So I'm not telling people how you feel but if you have a disability whatever, I'm not if you do that you might have a better life.

And I love the way that you phrased that Alex about you were sitting having coffee at the table and as you refer to cerebral palsy as C.

P.

As you say, you know, you don't like C.

P.

You're not gonna get you don't have any time for Cp.

But you figured okay if I have C.

P.

Let's find a way to to get along and see how we can kind of work through this whole process together that we might not like we might have a go go.

Maybe even if were not the most fun of you know what everybody did something I'm on the way.

So this time even if you know, I know.

Yeah I always had no life.

Yeah.

Well I would say Alex just to be clear when you say that everybody has a boss that they don't like I would have to say in your situation my friend that you are the boss of C.

P.

Thank you I'm every day that's my goal but on top oh you're on top you are on top my friend.

Um I appreciate that Alex.

I was gonna ask you quickly did you get fancy to become a Toronto Maple Leafs fan?

I didn't know what to do everything.

I I would.

Excellent.

That's amazing Alex.

If we could maybe talk a little about some of the things that you are actively involved in in particular.

You are an ambassador for Manitoba possible.

Yes.

What what does that involve Alex?

I go over the I thought this go organizations Children see oh they do everything you and all they have me over the years but we years and during that time they helped me with funding uh was there they give me a dogs.

Um Medical women.

It's a wonderful there that welcomes anyone have always in this way.

The main goal of is the society where everybody who's disable enjoy the life the best they can.

And the thing that's really awesome about is the everyone individually and I know I talked about that before but what do you mean by that is um I.

M.

C.

B.

If it's my my and my my voice once in a while but my mental capability is just fine, easy but another person that we have to be they may be physically able but not mentally capable and every discipline all the way has the same name, Everyone okay cases of, and the really amazing thing about if they drink everyone, they know everybody no matter what type of discipline they have and they use so much hope and yeah, and it's a great, it's a great name and I had a nice email back and forth with the chief executive officer of Manitoba, possible dane Erickson I guess who obviously is a big fan of yours also Alex speaking of the big fans, by the way, I just have to throw this in because again, I'll put, I'll post this in the show notes Ally, but I went on to your, your website for your company called Willpower Media and you've got a couple of testimonials there from a few people, one of them being Ron Maclean, everybody that knows anything about so many things in Canada Ron maclean is iconic.

And I gathered you came over to your place and shared some pickles and beer.

Yeah.

Either way back of within this prepare and we need to raise money for the many rations.

So my family, I had this idea, I've always been a big fan of.

So I emailed him, so where it was, he decided to come onto one of the causes and we have and and the, if he doesn't knows what is and you know what we're going to hell.

My cars was running everything for me usually.

Well this is a wild drugs for those doors to come out and you don't do anything.

But when he heard about my story, he decided to do everything for free.

So I've been lives pretty amazing.

There are so many of in history with the time where his day by all the way to, it's been almost two days in the community and we had a great time.

Well, I think in fairness Alex, you're being very modest Ron Maclean does have a fee.

He's highly respected, highly regarded speaker on so many levels.

I've heard him speak to corporations and he's just excellent.

And the fact is he deserves a fee because he's very good Now in your case, he would come to Winnipeg.

Oh sis to help raise $80,000 for the facility there.

And as you say, he did it for free and I think he did it for free because of his respect and his admiration for you.

It was it was 18, 18 1, 8, 18,000.

Yeah.

Okay.

Yeah.

No, that's fine.

My mistake.

I heard 80 but 18.

It's still a tremendous amount of money.

Tell me a little bit about why you decided to start your own business called Willpower media.

I was all my life.

I've been and there's a very small minority of us that wanna wanted more than what we have too many times in my life I've been disabled people who have always been essential and they just don't want it.

Now.

That's one maybe their parents, I don't know, it was, I don't want to, I don't know, do maybe, but they just don't, it's one issue.

Someone who's physically, this is and then, you know, all the you one, either they can the hell with isn't doing.

I don't want to get So where ways?

Why is it that?

No way.

No matter how you are, you can always do what you want to do.

And I feel I have a way I no, it is me and my, but it's what they can decide.

Yeah.

And what about me is, uh, company and we do some we do guys.

Guys.

I also something very part of this guy.

My guy come here.

No, he may be winning.

What do you mean?

What?

We're gonna come in here, It's the women can go onto businesses over, hopefully when they're all over the world.

And we bill and we do events, we were giving the, where the, uh, abreast.

Uh, we will uh, I'll be the one because there's some weird guns.

There's only thing, uh, this table in the window.

I have the one.

If I would be willing to help you with me.

What, what bathroom I going to do?

I'm going to go in the male bathroom.

So it's a very challenging.

It's a and when we then we will, again, well, I'll be in the bathrooms.

The bathrooms.

No, he just so many times.

The people who designed this bathroom did not have a disability.

No I wanna I wanna paint a bit but the audience this is I have to look about well I need help so I got something with me and I also about with me I had to do so all the heck you always fit in the bathroom stall.

That is the it says was really the only thing with just the toilet is moved over and this all is a little wire what you doing?

I ain't gonna close the door so it's yeah that we do visit abuse and I I give a waiting and go over there.

So you are basically the title of your on your willpower media you've got the question that's posed saying can I come in and you talk about accessibility matters and when you make a paint as you say Alex when you paint a picture that you need to use the washroom and you have at that time a female helper and I know that Karen is there with you and she's been there with you for quite some time Karen?

Hello but when you have a female helper in your own in public and you have to make a decision which washroom do you use?

How do you decide that Alex and what do you do?

Well I knew it it it and but there is no then I yeah I go in the field that I don't want to make an uncomfortable so is this something I do I go in, I do my business and I I can huh it's not the most ideal situation but if I have no other doors Yeah, well I know Alex and again I I love your spirit and energy on this, but you do make a very good point and I do think eventually, you know, and slowly but surely Alex with advocates like you and others and hopefully those of us that are not in chairs but have relationships with people like you that have a position of responsibility or authority or can talk about when you're designing a washer frankly, you know family washrooms are becoming much more compatible much more every day and so that it's not about putting pressure on people that may be in a chair, that might be a male in a chair with a female helper, You know you're going into a family, it doesn't matter.

The point is is that as you say to quote you, when you gotta go you gotta go and you know, that just makes it more humane right?

From a human rights perspective.

Yeah, yeah, the name of your podcast is amazing and the reason I say that it would be good uh they will be with you man.

And the reason I say that is because um yeah uh AD and the only reason is because I do not have now, see I didn't have home good service housing.

My life will be a lot better than it is now.

But because I don't know I only guess towers of help for this and the other one was I am alone and for me I everything but that only happens in so and boy guy Just trying to get 25 again.

Everybody don't get before I passed then I want to get because the way I live now do it is the one that enough but my body and mind of volume but and we're going the magazines soon and it is only with so I I I've been with President James the ads and to see my situation as in the I've been buying for 17 years.

The I haven't opened the as a so Alex let me try and and just make sure I understand what you're saying because you're telling me that you don't qualify as a vulnerable person and because you don't qualify as a vulnerable person they give you 10 hours worth of funding a day.

Yeah and there's always and but because my my I.

Q.

Is too high I get punished right?

Because your I.

Q.

Is too high.

You get punished right?

Yeah.

That's just bizarre to say the least.

But thank you for sharing that and thank you for being advocate for it and something more that we all need to talk about and learn from you.

Did you want to make a comment Alex about?

We talked about this just kind of in the lead up to this about medically assisted in dying?

Made the maid program.

I I need more funny more homier but I need to live and every door I open and go down.

No no no.

You know what after 17 years?

Uh well no no and it's in the bible but you know what the sad thing is doing if I was to go to my daughter it's rain to them that I have pain all the time.

My my the only game was my mother's in the best.

I will be approved in 10 days made.

And to me it because instead of providing me with the funding they need.

I need to before wife the government hand and called down because they see me as a nuisance and I gotta in their eyes I go so much and to me there is no actually no place in life and so it's something I'm very passionate about.

Not the husband and me itself but the government will be we're having just maybe going to the next world.

It's the in this world.

And so I've done about in my life.

I am very part of it.

I couldn't know the view but I but I didn't give off maybe but everything I just don't wanna I was see me as uh and a nuisance and Alex.

Have you been quite active on that debate?

I know that it's been discussed in the federal Parliament.

I know it's also there's a provincial issue around that.

Have you been quite active in that conversation in that debate?

You know, I haven't been, you know, I know most recently really well I know, I know I'm going, what happened is I applied way you do that, you go to the matter warehouse appear was and there is, I don't know everything I do.

I don't want my prison woman to have and I we had like a two hour hearing and I just want a couple weeks ago that they denied me any increase in our so always in the news nowadays is made and helping make it easier for people annoys me.

So I haven't been but I want to show you the this is a pattern of my number.

I feel like I'm one of the people that you make a living the government disease go away.

Going I ain't going away.

Yeah, no, I you are not gonna go away Alex and uh thank you again for being so candid and sharing that.

And it's got to be, I don't know what the wording is why when you have to go to the appeal to talk about your issue and what your request is and why you get denied.

You know, I find that to be troubling.

You know, and you know, we were in the pandemic and it's all for the pandemic and that's all issue.

It's up.

But during the pandemic there's all kinds of money but but all kinds of different but you know, and but what really annoys me is with government, government with uh all they went to and they don't wanna they don't want to hear the real story.

Yeah, but like I said, I am not gonna stop and if the audience something I I have learned along the way it comes from my I want begin we called it you is 100% you to me, everybody's going everything.

I they again and someone who I miss but as I was going so you never know what's gonna happen and always no way what Yeah and and Alex I will forgive you for quoting a former Edmonton oiler there.

But Wayne Gretzky is a pretty amazing hockey player and uh yeah, his quote about you always miss 100 shots, 100% of the shots you don't take.

So you've taken a lot of shots you continue to do so Alex, you have been a wonderful guest on this human's own rights podcast.

I knew I would learn a tremendous amount from you Alex and thank you for sharing.

Thank you for sharing and being so honest and being so open about some of your challenges.

But what's more important is I think your ability to overcome those to talk about the possibilities to talk about the being a disability advocate because you take tremendous pride in that it shows you're out in the community, you're making a difference and I'm going to give the last word to you Alex but I did want to quote you from your website that on your website you say and you close by saying it's my goal to show the world how to embrace their own willpower and individual possibilities.

Talk soon, Alex Litwin Alex, thank you very, very much for taking the time to speak with me today.

Okay, bye bye.

Thanks for listening to Humans on Rights.

A transcript of this episode is available by clicking the link in the show notes of this episode.

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