#3 - It Defines Me, But Doesn't Confine Me

Sulaiman 00:00
The doctors in the UK basically said I will be dead at five, then when I got to America at age 10 they said 15. And last month, I just turned 35. So, the doctors don’t really know what they're talking about.

Matt 00:25
Hello, and welcome to the Prelude Podcast.

In this episode, you’ll be hearing from Sulaiman Khan. Sulaiman is a disabled entrepreneur and activist, and he shares his perspective on how society often overlooks disabled people. He opens up about his childhood diagnosis with muscular dystrophy, his experiences within the education and healthcare systems in the UK and the US, outlines what ableism is, talks about the overlooked creativity of disabled people, and the pros and cons of social media amongst other things.

Sulaiman has had an impact on how we have thought about accessibility for this podcast – Sulaiman pointed out the importance of having transcripts for our episodes, and you can find a transcript of this and our previous episodes on our website at www.preludeaudio.com. 

We recorded this episode in the summer of 2020, at the height of the COVID-19 lockdown here in London, and recording over zoom had some limitations in terms of sound quality, so please bear with us on that - we are learning as we go here! Hopefully, it’s not too much of a problem though, and hopefully, you too will find Sulaiman’s thoughts as eye-opening as we did.

So without further delay, this is Sulaiman Khan.

Sulaiman 01:56
My name is Sulaiman Khan. I am a disabled entrepreneur, and extraordinary storyteller, and an adventurer.

02:02
So I was born a long time ago, in the 80s. And so, I was born in East London in Hackney. And I grew up with my parents and my grandparents.

02:18
At around 18 months I was diagnosed with a disability called muscular dystrophy, because my mum noticed I wasn't able to sit up like my older sister, I wasn’t able to do the normal things that young children are able to do.

02:32
Muscular dystrophy is basically a degenerative condition. Basically, as I get older, I also get weaker and weaker, I get progressively worse, which is why, you know, I can't really sit without my wheelchair anymore. But apart from that, it's okay, it’s life.

02:56
And so growing up from a very, very young age, my mum in particular, was very open about my condition from about age two - three, I knew I condition inside-out. And basically my mum said “you could die today, you could die tomorrow”.

03:13
Growing up, it was interesting, because especially after my younger, two siblings…I have three siblings; I have an older sister, and a younger sister and a younger brother, and were all always supportive and growing up is quite a challenge. Because of the first 10 years of my life, I had to go to a special school in East London. And all I did every single day, is sing nursery rhymes, which is not very helpful. I didn't realise how much I hated it until I left.

03:49
And so growing up our education system in the UK wasn't that great. Then at age 10 we moved to America, around in the Washington DC area for my dad’s job. And so my whole family moved out there. And it was quite an interesting experience.

04:09
I couldn't - when we moved to America at 10 years old - I couldn’t even read or write ‘Spot the Dog’, which is not very helpful, you can hardly read and then very quickly, because the way the American school system is setup, they'll push you quickly into a mainstream school environment, which is very helpful.

04:38
And so even though I was under the special education department because I needed the additional support, such as a note-taker and assistive technology, I was still in the mainstream schools environment. So I was able to very quickly, you know, learn to read and write. And for the first year, I didn't do my homework. I said “homework? What’s this?” and I got in so much trouble…it was hilarious.

04:57
The time in America was a challenge, particularly having a disability. Because as we all know America’s healthcare system is really bad. And everything is privatised, it's really hard because my family were paying over $100,000 a year for my healthcare and that’s not sustainable at all, which is one of the main reason why we came back to the UK, because no insurance company wanted to cover my healthcare. And you know, most of the time in America I was really sick. I had pneumonia three times while in American - that was really challenging.

05:36
So I was diagnosed originally in the 80s, when was it? 86 when I was originally diagnosed, basically, the doctors in the UK basically said, I will be dead at five, and then when I got to America at age 10 they said 15. And in the last month, I just turned 35. So the doctors don’t really know what they're talking about, to be honest.

06:05
And so for me, it's always that thing especially up until about age 21 there’s always a lot of anxiety, like “Okay…I'm gonna drop dead any day now, I’m gonna drop dead any day now” but when that kind of thing happens, and when you have things like pneumonia so severely and you're into that point where you know you're nearly there, nearly there.

06:27
So the second time I had pneumonia for example, in America, I was in the hospital for three months. I couldn’t eat for those entire three months. All I had is in IV, and at 11 years old I went all the way down to that 10 kg, which is not good at all for an 11-year-old. But I got over that and made it through.

06:48
And yeah, and I think it's hard to plan, but disabled people often have to plan so far in advance for so many things, for example, accessibility things. You know, to go anywhere it takes so much planning to get support in place. It's not as simple as me waking up today and say, “Oh, I want to go here.” I say, “Okay, do I have a carer to join? how do I feel today? Is my body okay? What is the accessibility like? Is there going to be disabled parking is there, for example, a disabled toilet? (if I'm gonna be out all day).”

07:28
And those kinds of additional barriers and additional challenges, but I like challenges. And the priority is if I was always going to live with a disability is; make sure you’re surviving. And in a world that often wants disabled people to be dead, or doesn't want us to even thrive, survival is really an act of revolution. And really, you're trying to challenge society in that sense.

07:55
So I was 21 when I came back, even though I was still a British citizen, I never gave up my passport, I had to wait three years before I could start university, otherwise, I would be classed as an international student because I left for over 10 years.

08:12
So I didn't want to pay international student fees so I said I’ll just wait three years. But in those three years, I was able to get everything in place. So I was able to get like a care package in place. And to get carers, I was able to get the new power wheelchair that I really needed. And things that allowed me the time to get all the support I needed a place to actually apply.

08:35
I studied Advertising and Brand Communication at the University for the Creative Arts in Farnham in Surrey.  And so in America, I’m going back a step, in America my whole time in high school, I studied marketing, and that's where I really got my excitement for creativity and really passionate about that.

08:59
The town itself in Surrey, it wasn't very accessible, basically, a very old market town, and cobblestones everywhere. And so even to go to the pub or anywhere, I couldn't hang out with friends. I couldn't do that because it wasn’t really accessible so most of the time I ended up hanging out in the Slug and Lettuce, which is not that nice to hang out as a student.

09:27
Even things like the accommodation. Obviously, I couldn't stay on campus without my carers and needed a second room to be able to do that. I had to pay for that second room, as well, because neither the university nor local authority wanted to pay the difference, or help me cover the costs.

09:47
So I had to pay £9000 a year just for the accommodation. And that was before the tuition on top, £3500 a year for tuition plus £9000 a year for accommodation.

10:03
And so as you can imagine the whole time at university the financial burden was quite stressful and if it wasn't for the Snowden Award Trust, it's an organisation that helps students in funding the cost of university and so without them, I’m eternally grateful because, without their financial support, I don't think I could’ve coped as easily. It was a very, very difficult for me to fund that as a disabled student.

10:35
So prior to going to university I was even though coming from America, I kind of gained my voice and got an interest in activism, and creativity, I was able to say “oh it’s Sulaiman here and not the quiet kid who sits in the corner”, even though that was the case up until university I was still quite reserved, quite not as vocal, not as proactive.

11:02
And then on the 14th of September 2009, the first day of university first day class actually, I said actually, “what the hell am I doing?” I didn't really like the person I was, I didn't want to be that person, I wanted to be someone who was quite proactive, or you know, observing the energies around me.

11:23
And so I completely changed my mindset, the way I think the way I behave or how I see myself, I started to be more proactive, and then I started to go to a lot more events in and around the creative industries, to design events, creative events, talks, lectures, anything I could get my hands on and really engage.

11:50
At the time when I started university, I was about 23, so quite a mature student compared to the 17-18 year olds that were just there to like, get drunk every night, and get high basically. It was good but not every single night. And so again, it's just like, trying to challenge myself into wanting better for myself.

12:20
University really opened up the possibilities that I was able to achieve and the fact that, for example, the wheelchair I had was really good, but the wheelchair seating…I was in so much pain. So my legs were going completely numb. I was in a lot of pain.

12:37
And so I would sit on it eight hours a day, four days a week. And so I still did that and kept pushing forward. I did a 10,000 word dissertation, I graduated with a 2.1 so I’m like “yay”. So then it is to keep pushing forward.

12:57
And then nobody told me after university how hard it would be as well. It took three years to get my first job, not because I wasn't trying, because no one in advertising is still to this date, in 2020, one of the least accessible and least diverse industries that you can ever find. Often they say the right things but they don't have any kind of action behind it.

13:25
So finally I got my first job, unfortunately, it didn't work out. After eight months, I had to leave because it was quite a toxic environment. It wasn't supportive, it was not very open in terms of the kind of things I wanted to do.

13:41
And it was an interesting experience, I learned a lot just out of that for example how to value myself more, how to be much more vocal about my needs in terms of accessibility, and things like that. And when I left in July of 2016, it was quite a challenging time. I was really down about it. I just took a few months off, just to reflect and recharge.

14:13
And then in October 2016, I decided to set up my own business. Because, you know, since I started university, I was actually quite active going to events, different award ceremonies, all kinds of things in the creative industries.

14:31
But I never saw anybody like myself…as a wheelchair user. So I was like, “where the hell is everybody?” I didn't make any sense to me, because even to this day, there is not enough representation of disabled people in the creative industries.

14:49
I wanted to create an organisation that really championed disability and creativity. I still don’t see that kind of niche, that kind of championing.

15:02
There are many great organisations that try to get disabled people into work. And often what that means is that you end up working in either a bank or supermarket. Like every disabled person wants to work there…I don’t, to be honest, I'm not gonna hand out stickers in Tesco. “Oh, welcome to Tesco.” No, thank you. Can you imagine that? No, not in my sequence. No, no, I don't do that.

15:27
And so I set up my business ThisAbility Ltd to really try to do that. And the first year, I didn't really do much with it. And then I launched officially in 2017, in October 2017. And then a whole year after that, we got a network for disabled creative talent.

15:53
And then in around 2018, I didn't feel it. It wasn't right. It didn't work for me, I just felt a lot of pressure from society and the people around me like “Oh, yeah, Sulaiman, you’re a networker, a recruiter for disabled people?” I didn't want to be a recruiter, we all hate recruiting, I don't want to be hated.

16:16
And so then I decided to adapt what I’m doing, and really change into an organisation that exists to ignite, invest in and amplify disabled creativity across the world, for a just tomorrow.

16:35
So what does that mean? So really igniting disabled creativity, so really championing it and pushing it forward. Investing in it, not empowering it. Because I think, often, as I said earlier, there’s not enough financial investment into disabled people let alone disabled creative people.

16:57
All disabled people are creative, you know, so really amplifying it, pushing it forward to propel it into society. So I think, really looking towards disability justice is something I’m very passionate about and really fighting for equity over equality.

17:16
So really looking at the needs of the individual, rather than making everything the same. As you know, none of us start from the same place, or have the same needs. So making everything the same is not going to work for everybody.

17:35
What I'm very passionate about is working tirelessly to destabilise the accepted narratives of disability, and creativity. And over the past couple years in particular really pushing hard to really engage in this.

17:55
Last year I did a project with Getty Images to do some content for their disability collection, having some really interesting conversations. But unfortunately part of the challenge is when you’re disabled and you have a business people automatically assume you’re there just to do some charity, or you’re just there to inspire the world into nothing for free. And that whole idea that disabled people are not good for anything other than to inspire the rest of the world.

18:34
Actually that ‘i’ word is so dangerous for disabled people because, the way you treat disabled people - and that's always a default setting – when I go out or have meetings or when I meet anybody; “Oh, you're so inspirational. It's so brave” you’re like; “really? I can't cure cancer. I'm not a teacher, I'm not a neuroscientist.” So what have I done? I’m just trying to get on with life like most disabled people want.

19:00
I think what would be really helpful for the audience is to do a very quick summary about what ableism is. So I love this definition from this amazing lawyer and activist and she says that ableism is “A system that places value on people's bodies and minds based on societally constructed ideas of normalcy, intelligence, excellence and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, colonialism and capitalism.”

19:35
So again, it's systematic oppression that leads to society determining who is valuable and worthy based on a person’s appearance and or the ability to satisfactory reproduce or produce, excel and behave.

19:51
So I think, really looking at the deep causes of ableism and how it affects disabled people, even things like casual ableism, it has a huge effect, even things like calling a disabled person, inspirational or saying, “Oh, you don’t look disabled” or “you're too young to be disabled” I think, that has such a huge impact on disabled people.

20:19
And often, as I said, seriously, society in general has a really hard time, even saying the word ‘disabled’, or even ‘disability’ and end up saying ‘differently abled’, ‘special needs’, you know, ‘difference in life’. And it’s just like, no, just say the damn word, there's nothing wrong with it.

20:39
Lawrence Carter-Long, an amazing disabled activist in California, basically started a hashtag called #SayTheWord to actually say the word disability and disabled, and there is actually nothing wrong with.

20:55
My good friend, Andrew Gurza wrote about a year or so ago, he said, “disabled people can be complete arseholes as well” and I love that because, you know, just because you’re disabled doesn't mean you can't be a racist, sexist, ableist even, and you know just treat disabled people as people.

21:17
And so that's one of the reasons why I set up my business. And two years ago, I turned it into actual proper Limited company, and not a charity because I wanted to be treated seriously. I wanted to do better for myself. I wanted to actually create the right environment that I can say, “actually I did this, I’m proud of this. I'm working hard toward this”. But I think ableism and inaccessibility makes it a challenge daily.

21:50
So the way I understand and I think is that disabled people are probably the most creative people on earth because from a very young age, we have to be just to survive and to adapt to society's inaccessibility, to society's ableism.

22:08
I think creativity and disabled people are intertwined in our whole life, so you have to be creative, innovative, really good problem solvers, rational thinkers. And that's what organisations say they need. But, you know, they don’t really look at disabled people.

22:33
In the UK, disabled people are twice as likely to be unemployed, more likely to live in poverty than our non-disabled counterparts. And so, again, allowing people to use their creativity is a great way to challenge those perceptions because there’s so much fear and scare mongering around disability that is quite shocking.

23:00
In this COVID time, the landscape of disability is quite devastating, what's happening and in 2020, ableism, racism is really a potent cocktail of devastation.

23:17
And so, really myself trying to understand the power of the reach that I have, within myself and actually recognising that the disabled communities as a whole is fundamentally treated so badly in every aspect of life.

23:38
For example, there is no marriage equality for disabled people. Because in many places, including the US and the UK, if for example, I wanted to live with somebody and we’re in a relationship, the state could say “actually, no, no, no we’re going to take away your care because you're living with somebody”, which is just fundamentally wrong.

24:00
Even things like earning, if we earn too less we’re not earning enough, if we earn too much you take it away, that pushes us more into poverty. On average it costs disabled people in the UK £583 pounds - each month extra - just for being disabled.

24:21
So just imagine, if you're a woman or a minority or any other marginalised community, and you had to pay nearly £600 each month extra just because of the fact that you're a woman or a minority. And so it's just really not good. And things like that need to change. I think it's getting better, but society still doesn't get it even in these times and not really engaging with disabled people…like how do you deal with mental health in isolation?

24:58
I find it hilarious that now everyone is like “we can work from home we can do live stream conferences”…really? we needed to do that decades ago. Your disabled people requested it. We were really shouting, “please help us”, and nobody was listening.

25:18
Often people say, you know, we were forced to go on the benefits or forced to get Universal Credit, help from the government in the UK and America, you know, we can't be on £100 a week. It's not enough.

25:34
Well, frankly, I find that hilarious, because governments, consecutive governments have forced disabled people to live on less, for decades and decades and decades. And disabled people are saying, “please, we need help we can’t live on this, this is not enough even to survive.”

25:54
And you know, just deaf ears, nobody cared, nobody listened. And I just find it quite ironic, because, you know, disability is the only marginalised community that anybody could become a part of at any time.

26:15
And we all could become disabled anytime. And when you take into account things like neurodiversity, so, for example, ADHD, or dyslexia or dyspraxia, and you take into account things like mental health, such as depression, even things like pre-existing medical conditions, or heart disease, then you realise why disabled people, we are the world's largest minority.

26:44
So I think yeah, I think it's just about really showing up for disabled people, and really saying actually you don't deserve to be punished for being disabled… you deserve to have access to every human right that we all have the luxury of participating in.

27:06
I think, particularly for example, if you're a person of colour, if you're indigenous, or if you're a black disabled person, or LGBTQ+ community and you’re disabled, nobody is looking at that intersectionality and how that really can add additional barriers and additional layers of racism and ableism.

27:32
That makes it even more challenging to survive, let alone thrive. So I think it is we have to really keep pushing, keep challenging ourselves. And even myself, I'm not an expert on everything about disability, but what I love to do, I’m very curious. I like to ask questions, get really excited. I just get curious and like learning, challenging myself, even though I know about my own disability, actually is this what I think or is this how society wants me to think about my disability?

28:08
In terms of my attitude, I think I would all come down to my mum in particular, I think from a very young age, she's always treated me like the rest of my siblings. If I did anything wrong if I was rude, even to this day, at 35, if I speak to her in the wrong way, I would still get chilli powder in my mouth, there is no question about it. I think she taught me actually; yes, you get good days you get bad days, but just to get on with it, it’s life.

28:39
She’s really taught me how to be really creative, in a sense, adapt to the world around me, in a world that doesn't really want me to survive let alone thrive, and so, and it's really, really, really helped me the most is particularly the last four years, is being a lot more embracing, and leaning into my disability.

29:07
So, you know, really challenging myself, by my disability to actually leaning on the disabled community,  really having incredible conversations and friendships, on disabled people across the world. And often you hear, a disabled person, he “suffers” from Down’s syndrome, or he’s wheelchair “bound”, or you have all this weird ableist language.

29:36
First of all, I don't “suffer” from anything, I blessed by my disability, like it's a choice, it's like who I am as a person. It's my identity, basically. And, secondly, actually, when you see society and particularly non-disabled people say; “oh, he achieved this, despite his disability, oh, he went to university. Oh, he achieved a marathon. Oh, they did a degree, this and that. Oh, they’re working. Oh, they’ve got kids, despite their disability”.

30:13
And that kind of narrative in the last year or so really, really, really frustrates me. Because all that does is it says to society about disabled people; your disabled identity, your disability is not valued, is not valued for anybody, it has no place on this earth, which is fundamentally wrong.

30:34
So the way I started speaking, acting and writing is that 100% my disability does define me, but it doesn't confine me in any sense or shape.

30:46
Because the things I get to do, the people I’ve met, I doubt that most people have done. All the cool or crazy things that I get up to, like meeting Prince Philip or going through the exit only entrance…skipping the queue at Disney World, who gets to do that? I do!

31:08
I think it's really allowed me to have that sense of, you know, as if you want something just chase after it. I just go up to anybody and say “hi”, and even having conversations with like, famous designers and people who are on Netflix and things like that really interesting conversations.

31:28
I don't think if I didn't have I disability, I would be as or have such an incredible and fascinating and such a wild life really just, you know, I'm just really, really blessed to have the people in my life and really enjoy this.

31:49
Also I enjoy living each day for every moment, I think for me, as I said with muscular dystrophy my muscles get weaker. So what's happened in the last year for me personally is that my muscles have wasted away. And then at age nine, I developed scoliosis, which is curvature of the spine. And so which is why I said, I can't really sit without my wheelchair anymore, because my spine is twisted so much.

32:20
And so as I get older, my energy levels are really fatigued. Really, I don't really have much energy it takes much longer to write or even to talk, it's very tiring because the lungs and face muscles get tired and so whatever I do say, whatever I do do, whatever I act, now it's every single day is extremely deliberate, and is extremely decisive.

32:48
Because it has to be and so for me, I'm not gonna waste anymore time on the noise all the nonsense like “Oh, Sulaiman, you're so inspirational.” I don't have time for that bullshit anymore. Like it's just not worth my time. And this is who I am. This is who I want to be, this is how much I’m worth, take it or leave it, if you want to work with me, these are my rates. That’s it, done.

33:17
I’m trying to diversify myself day-to-day, it's a challenge and a good challenge, trying to keep that mindset. Yes, I deserve to be happy. Yes, I deserve to fall in love. Yes, I deserve to have a sustainable income. Yes, I deserve, you know, just to be human, right?

33:41
And understanding that disabled people deserve and have a right to be human. On a basic level, that's the most important thing I think.

33:52
And I kind of have a love-hate relationship with social media even technology as a whole. And so for me, since social media came about, so I’m quite old fashioned I remember the days of dial-up and floppy disks and stuff on the good old days, and VHS cassettes.

34:11
And so now, since social media, what it’s meant for is I can really connect to a community that's so strong, and so incredibly creative, and disabled community, they're incredible.

34:27
And so it's allowed me just to be a part of something greater than myself. And so, but on the other hand, social media really has a negative toll on mental health often. Because often all you see on social media is, you know, it’s like looking at a lens through a lens, right? And so everything is filtered.

34:51
And that's what I'm understanding as I get older, is you see things like people working out every day, and look, especially when you take into the disabled masculinity, for example, I'll never be able to gain muscles, or get a six pack or anything like that.

35:08
So, where do I fit into that visual culture? Getting ready for the beach or going to the gym. So, that makes you feel less human or less of a man.

35:20
So that's why they've invented the mute button. And that's why they invented the block button. Just mute and block. And that's what I started doing, cutting out the noise. And, unfortunately, that's not often enough. Because sadly, disabled hate crime, and disabled suicide in the UK alone has increased so much in last 10 years or so.

35:49
And so often not many people are even aware that there is a thing like disabled hate crime. If people think that it doesn't exist, it completely does exist, and there’s devastating things that are happening and said to disabled people.

36:06
It happens in the online world and people think that they can get away with it in the real world. I had many of my friends talking to me about online abuse, how social media companies don't do enough to protect disabled people which is 100% true. Again, that goes into the real world.

36:27
So, one of my friends she’s a wheelchair user as well, she uses a manual wheelchair, she was coming to meet me a few years ago, and she didn't show up, and I was calling and calling and calling. I got really worried. So several hours later, she sent me an email, saying “it’s been a terrible day”. In the morning she went to a local shop to pick up some stuff. And somebody not only stole her purse, on the back of her wheelchair, but pushed her out of her wheelchair onto the pavement.

37:03
And so those kinds of things we shouldn’t put up with as a society, and I think social media allows us to be a lot more vocal and united as a disabled community. And actually highlighting ableism and highlighting when you add racism as well, what that means to us on an individual level.

37:25
And I think there's so many great people, like amazing, incredible, disabled people that I deeply respect and deeply admire in terms of their creativity in terms of their whit, in terms of their you know, just the energy that they give to the community and to me, it just makes me feel in a disabled global family, as I call them, are just so powerful and so incredible and so this pushes forward and challenges society on what it means to be disabled on a day-to-day basis.

38:08
You know, the older I get I’m saying actually I have huge privilege and power. As a man, I have social capital, I’m somebody who is educated, I have a degree, I travelled the world, I can communicate, I can talk, I can think I can see, so I have huge power and privilege.

38:28
And understanding that and recognising and doing the deep work myself to recognise what can I do to be, to do better to really challenge myself is very important in trying to pass the microphone, and trying not to take over the conversation.

38:50
And even though I have the habit of what I’m doing right now to talk and talk and talk, I think it is important just to say actually there’s great people out there, other disabled people, particularly the black disabled community, I think I want to give a huge shout out to them.

39:10
I think it's devastating what's happening to the community right now, I think we have to say, just like any community, disabled communities just like any other community. And there is a lot of racism, colourism and anti-Blackness within the disabled community. I've seen it, I felt it. And I don't put up with it. I don't want to put up with it.

39:33
So I think we have to have difficult conversations to move forward. And disability is not difficult, people find it difficult to even say the word disability. So until we have those conversations, nothing is going to change.

39:50
For me personally, I'm gonna break out into two parts. First of all for non-disabled people I think get over yourselves. Like, I think it's okay to get it wrong. I think and understand that not all disabilities and all disabled people, even if you had the same disability, we might have completely different personalities, our condition might be different in our bodies.

40:14
And you know, just understand that not all disabilities look like me either. And you can be individual and not to judge us and not to be hurtful to us in such a devastating way. It’s destroying and killing us on a day-to-day basis and just understand treat us like people with respect and dignity and just pay us our worth, right?

40:38
And so don't assume that just because we're disabled, that we don't deserve to be paid for our time or our value. Just pay us what you said you would pay us…triple your rates! because trust me, we are disabled, we need it.

40:55
So just have a conversation. About 50% of the people, non-disabled people in the UK, have never said hello to a disabled person. Seventy-six percent of people in the UK, haven't even invited the disabled person to a social event and 16% have never invited anybody to their home.

41:19
And when the non-disabled community are not even going to say hello to a disabled person. Obviously, you're going to have misconceptions and fears and doubts. And that it is really about challenging it or not being afraid to get it wrong.

41:36
Most of us are relatively nice people, like anybody else some of us are arseholes, but that's okay. And so just say hello. I’d rather have someone come up to me and say something in ignorance, and I say actually, this is not what we say, this is more appropriate language, that kind of thing. Rather than not talk to me and not even engage with me, whatsoever.

42:04
So I think fundamentally this starts with a conversation, and not being afraid to have that conversation, and not being afraid to be around disability, even if it makes you feel awkward, if you're uncomfortable, that's life, that's growth, it challenges you, forces you to think beyond yourself beyond your capacity.

42:30
And often when you're pushing disabled people under the bus, be careful that you don't trip yourself. Because, you know you're gonna end up being disabled one day the older you get, you can become disabled anytime in any capacity. So just start with a conversation.

42:52
And the second thing I wanted to add is for disabled people, I think my advice is to not be afraid to be disabled. To be you and to your capacity, whatever you want to do, whoever you want to be, just be it, if you want to do something, just do it.

43:20
Yes, it might be challenging, yes it might take you 10 times longer, but there’s no hurry. It's not a productivity contest. And I think we have to get out of that mindset as disabled people that we owe the non-disabled society anything, we owe them nothing.

43:39
I think it's just so powerful to think, as a global family, what we can achieve creatively in problem-solving, and I see the capacity we have to really change the world for the better and I think in every aspect of society, I think disabled people we can be there; whether it’s in politics and in business, in every field, we should be there.

44:07
In medicine, there’s a lot of medical ableism, there's a lot of, even in education, there’s a lot of ableism and so as disabled people to just not be afraid to just be you and also just be open to the community.

44:33
And that sense of global community that we have that has really helped me a lot. Talking to other disabled people is something extremely sacred, and extremely safe about being in an environment where it’s only disabled whether it is physical disabilities, or invisible disability.

44:56
This allows you just not to explain ableism, not having to explain the social model of disability, not having to explain you're not an inspiration, not having to explain chronic fatigue or chronic pain or what that means for you on a daily basis.

45:16
And if you're having a good day or bad day or you're having a bad day or look like you’re having a good day. And so yeah, just to be open to that community and just lean on us, support each other and think together that we're going to just knock-out the whole world…to make it something it should have been a long time ago.

Matt 45:41
Thank you for listening to Prelude. If you’ve enjoyed this episode, please support us by leaving a review, subscribing to the show or following us on social media. And we hope you’ll join us again soon for the next episode of the Prelude Podcast.

END – 45:54