A Deafblind Scientist's Journey of Resilience and Leading Inclusion at Work

Have you ever faced a moment that fundamentally changed how you navigate the world? Max Fisher has, and they're here to share their remarkable story of resilience and advocacy as a deafblind, disabled, genderqueer scientist. From embracing the freedom that comes with a wheelchair to initiating a disability Employee Resource Group at work, Max's candidness about the challenges, victories, and humor found in daily life with disabilities will leave you both enlightened and inspired.

The workplace is more than a job – it's an ecosystem where inclusivity should thrive. With Max leading the charge, our conversation covers the transformative power of support and understanding for disabled employees. They don't just recount their own experiences but also offer invaluable advice for organizations striving to move past superficial diversity efforts. Discover practical strategies for fostering genuine inclusion and the often-overlooked nuances that can make or break a truly supportive professional environment.

Ending on a note where laughter and advocacy meet, Max and I tackle the quirky yet critical debate over restroom signage. It's a tale of one organization's dance with political correctness that might just have you contemplating the universal potential of emojis. Join us for an episode brimming with honesty, heartfelt stories, and a shared desire for a world where inclusivity isn't just a goal but a reality.

Transcript

0:00

AXSCHAT Max Fisher

NEIL: 0:01

Hello and welcome to Axschat. I'm delighted we are joined today by Max Fisher. Max is someone that has come to us by way of some of our previous Axschats and I love how the community brings everything together. So Max is part of Debra's Billion Strong community. And we are going to be talking about identity today. And Billion Strong is all about disability identity. Max is a deaf, blind, gender queer scientist, working in the field of nano medicine. And so Max that sounds like you're as rare as a needle in a haystack. You're hitting loads of different intersections. So tell us about yourself and your journey into the sort of disability advocacy space and how you ended up on here today, connected with us and let's take it from there. Welcome.

MAX: 1:03

Hi. That is a big question. I'll try and give you the cliff notes. So I started identifying as chronically ill in my sort of mid-teens is when I started developing like chronic pain and there was a whole journey of trying to figure out like what it was, why it was happening, why what do I do about it. And it was many years before I got any form of diagnosis but joining the chronic illness community, as someone undiagnosed but very much suffering, it led me into advocacy and activism because we need a voice because there are so many of us sat in the house, in too much main to do anything and no one is hearing us out. Like doctors are just saying it's like depression, anxiety and all of that kind of things. So I very quickly started posting about it and being open about it and being like this hurts all of the time and it also sucks eggs that I can't get out of bed because it hurts. Like, I would much rather be studying right now but I physically can't do it. So I sort of struggled throughout school. My grades kind of dropped a little bit. But then there was some undiagnosed neuro divergence going on in there. I heavily identify with that formally gifted kid that then suddenly hit a cut-off point where grades were no longer magically excellent and the struggles kind of continued. So I eventually went to university. I studied pharmacology, got a bachelors and a masters in that. And while I was at Uni, I managed to like work through a lot of the health issues and I managed to start getting diagnosed with things. So it ended up being Ehlers Danlos Syndrome, causing all my chronic pain and then the off shoot or secondary condition, POTS, postural orthostatic tachycardia syndrome, that went along with that. That has been sort of diagnosed three times because I keep getting send back to the GP but that's another story. And I became a wheelchair user about halfway through university just because I realised that trying to struggle and like walk my way there and not making it, nine times out of ten was worse than actually using a mobility aid. Turns out wheelchairs are not the worst thing in the world. And it got me so much of my independence back but there were more barriers that came with that. So there were swings and roundabouts. So I started wheelchair basketball, became wheelchair basketball coach and just kind of kept doing advocacy like, hey, you've got to put a ramp in. Stop turning the lifts off after 5pm because we don't stop being disabled after 5. And yes, it has just sort of grown from there I guess and then unemployment more. I made lots of YouTube videos being like, disability is cool. And I also have another rare condition called cold urticaria and that got some media attention in 019, pre Covid because I wear a face mask outside because if I breathe cold air my throat swells up. That is not very fun. So I started making videos about that and then branched out into queerness and stuff.

NEIL: 4:29

Okay. Hang on. You go, where do we start and I go, where do I come back in. So we have had over the years about 150 different people appear. But one of the sort one of the recuring themes is around chronic pain and how people aren't believed.

MAX: 4:49

Mm hmm.

NEIL: 4:51

Another recuring theme is the amount of people that have EDS that are not believed and not diagnosed. And then also quite a number of the people in the EDS community are also neuro divergent and gender fluid. Max maximum.

MAX: 5:12

Mm hmm.

NEIL: 5:14

So it's interesting that these patterns are occurring on you know Axschat, in our audience and it's not that I'm going out there going you know what I need to find another EDS, gender fluid, chronic pain

MAX: 5:28

Yes, for sure. I think there is definitely a study in that but I think one of my theories is that because queer focus sort of know what it's like to be different, we notice things in our body a little bit more.

NEIL: 5:46

Mm hmm.

MAX: 5:47

So we are more likely to speak up because we know that we have that outsider feeling. Whereas people who have never experienced that, they tend to sit it. So they might be in incredible amounts of pain but they are not talking about it. They are not doing the journey because they recognise that they feel outside but they don't know what to do about it. Whereas lots of neurodivergent people, lots of queer people or the other way around, if you are already disabled and then sexuality, boom. You're kind of already there. You have done the journey once and you're just like, I guess we are doing this again. The first step is the hardest and the second one is less so.

NEIL: 6:29

Yes, I think that's fair. I mean, I think there is multiple booms.

MAX: 6:33

There is definitely multiple in that, but that's one of my ideas.

NEIL: 6:36

Yes. But I do think that having been like diagnosed with dyslexia and even later with ADHD and having been told that I was depressed and stuff.

MAX: 6:52

Oh, I had the worse phone call with a GP another day, I thought I was anaemic because spoiler alert, I was anaemic, but like on the phone she was like, do you think you might be depressed and it was like three questions in and I was like, why are you how did you get there so fast. Like no, I'm just I'm tired all of the time. And then she did a blood test and I was quite anaemic.

NEIL: 7:14

Right.

MAX: 7:15

So we do know our bodies sometimes.

NEIL: 7:18

Yes, I think we do. But where I was going with that sense of otherness. Definitely the first time that you get to a diagnosis you feel an explanation for some of that otherness and then as you go through it again, it's less of a trauma and more of a relief.

MAX: 7:41

Yes.

NEIL: 7:42

In terms of you're able to come to terms with it.

MAX: 7:44

Yes, 100%.

NEIL: 7:45

Yes and so and yes we do advocate. But I advocate for this stuff. As you go through it, you want other people's journeys to be easier?

MAX: 7:58

Exactly that. And that's exactly why I do everything I do is because I don't think people should. Just because I suffered that doesn't mean other people should. Like if I can make it easier for somebody, damn well I'm going to try?

DEBRA: 8:12

I appreciate that.

NEIL: 8:14

Absolutely. So of all of these different areas, so you know quite often once you have done that and you start advocating.

MAX: 8:24

Mm hmm.

NEIL: 8:25

That then means lots of interactions with other people. You went on a journey within your own workplace as well. You got a job.

MAX: 8:33

Mm hmm.

NEIL: 8:34

You then started up an ERG. So tell us about your experience of starting up and running an employee network.

MAX: 8:44

Yes. So this is like one of the highlights of my career so far. Even though it ended sort of on a sour note. It is still one of the most wonderful things I got to do when I did. So when I started employment with my previous employers, one of the first things I did was write like an all-company email talking about deaf awareness week and I'm like hi, I'm Max, I'm your newest deaf employee. Here are some tips on how to speak to deaf people. And you know, please know I am not being rude if I ignore because I probably just didn't hear you. And that email just got to the right people immediately because it was all company. So they all read it. And then, months and months later like I think it was like nine, ten months later, I had an email from someone quite high up in the company being like, hey, we are thinking of starting a disability ERG, we can't think of anybody better to help run it. There is this other person who wants to get involved. So let's all have a chat together. And then it just kind of spiralled from there. It was just like, I was in, from the moment they said disability group, I was in. And we put in a lot of work to get it to launch and like, all of the logistics, like logos, design, how are we going to do this. When are we going to do this? What is the launch going to be? And someone suggested like, let's have a speaker. Who can we think of? And I was like, if we don't have a budget that's going to be quite hard. I can speak and I did. And I just talked about, I sort of rambled a bit, I never really scripted it, which is something I need to work on. I just talked about growing up being told, yes, you should be a scientist, have a great career and then the moment I was disabled, everyone was like, oh, um, I don't think you could do that anymore. Well, what is your plan now. And then having like a three-and-a-half-year employment gap because employers were scared of disabilities. And then finally getting my job because someone talked me up who already worked there and then I managed to sell myself well in the interview. I talked that and the stuff about being undiagnosed. Going through a diagnosis, having multiple diagnosis. I just sort of talked about my life being a bit vulnerable with everybody. And then the feedback I got from that was like so heart warning because there were employees that I had walked past every day and they were like, I had no idea. Thank you for sharing. And we got to help people as well. So there were people that came to the launch that were not they didn't identify as disabled. But they had problems, like, work related problems, like science related problems that could only really be solved by someone with an experience of blindness and they were just like, this is really weird but here's the problem we are having and I was like here's many potential solutions. Good luck. We also had some like one to one. We gave some one-to-one support for other disabled people within the company who were just like, I don't know how to progress my career because I'm autistic and I don't understand the social aspect of it. I don't know how to ask. So we were able to like, link them up with relevant people to like to get them started but also give them a space to be like this is how I feel about my disabilities, no one else gets it. But we did.

DEBRA: 12:23

Which is very powerful.

MAX: 12:26

Yay.

DEBRA: 12:27

I mean you have such a big story, Max, it's interesting. I love listening to you talking about your experience. But at the same time, your life experience shows employers the nuances, the nuances of being human and I always am saying, you know, disability is just part of being human. Why do we make it a big deal about it. Why don't we just include all humans anyway. But at the same time, the nuanced complicated issues involved with it. It's like a brand really wanting to do the right thing and they see you for example or an employee like you and they are like, oh right, we could do even better by our employees and others and really having the will to want to do the right thing but not always having the budget. Especially with these ridiculous crazy times. And so one thing I wanted to do was make sure that the audience got to meet you and hear what you're saying and to really think of the nuances associated with what Max is saying. Especially since she is representing different lived experiences and the uniqueness of being a human being. So but one thing I would be curious about because I think it's really hard right now for employers. Maybe even a little bit harder in some way for corporate employers, not that I'm feeling sorry for corporations right now. I think they need to pick up the be better thing but at the same time, I think society sends you know employers so many mixed messages and society, you better solve all these problems. We all didn't solve but you better solve it now in the workforce. So one thing I would, I think might be helpful for the audience is what would you advise that they do Max, when they are really. This is another big question okay. You take it wherever you want.

MAX: 14:37

Perfect.

DEBRA: 14:38

I believe employers are trying. I believe they are trying to be sensitive about it. They are trying to understand all these different moving parts. They hear from people like you, Max and I know that are hearing what we heard in that wow, she has all this innovation and creativeness and great answers. Wow, this is the kind of employee we want. But I often feel they just don't know how to really include diverse humans and I also want to make another point, while you think about this, in that, I also just want to show you love and empathy for your chronic pain. My beautiful daughter, Sarah, born with Down Syndrome, she lives with chronic pain and it has been so difficult. And when I'm sometimes like, Sarah, you can be nicer. You know, it's hard sometimes to be nice when you feel really bad. So I just am so empathic over anyone that is walking that kind of pain. My husband did and now Sarah is. And it's effecting my life, as her mother, somebody that loves her and is one of her primary caregivers. So I don't think we can underestimate how much chronic pain is hurting all of us. So I just wanted to toss that out to you too and send you love on that one as well. And thank you Max for what you're doing.

MAX: 16:06

Yay. But yes, I think that employers often view disabled people as like a box ticking exercise, that's like because I think diversity monitoring has got quite popular recently. And while obviously, it is good to make sure you have a diverse workforce, I think using it as a box ticking exercise, yes, just to say, yes, our workforce is diverse is not entirely helpful because the amount of friends I have, who are disabled and they feel like a diversity hire because when they show up, the workforce is not prepared for them to be exactly who they are and exactly as disabled as they are. Like they will hire a wheelchair user, but their lift will be broken, there will be a step at the certain task. They've done a remote interview to say, yes work from home is fine and then they demand that you show up to the office very day and then they get grumpy when you're like, I actually can't show up to the office today. Like, I physically cannot get in the door. So I think they just need to start seeing disabled people as people. I don't normally encourage people to use terms like people with disabilities because if you have to remember that I am a person first, that's not ideal. I think, sometimes for employer 101 that is the way it has to be because they just forget that we are people with other interests. I've other interests outside of being a queer person and being disabled and being deafblind and doing my advocacy. Not once have I been asked what else I do. And that's not a dig at anyone here because that's why we are here to talk about but just like even in my day-to-day life when it's like, oh, how was your weekend. It's like oh, did you get up to anything. Like it's always like, you know, what did you do this time, kind of thing with an elbow nudge. And like, I am an entire person and science is a big part of that. Because I love science and I love the problem-solving side of things. I love the hands on, that cell culture, so I am a cell biologist mostly. And I really love the hand on working with cells and being able to figure out why are cells in my flask not happy and then making them happy. Even though they have not told me anything, I'm just sort of picking up on what they need, I guess. But I really love that part of it and like being a disabled scientist sometimes means I have to do it a little differently and so many employers think that they have to figure out how I can do science and it's not so much the case. We have to work together to make it accessible and ensure that I am able to do it correctly but I am also able to do it in a way that's accessible to me. So I am used to living with my disabilities. They are not. It helps if they take like a slight backseat to be like, okay, so this is how you split cells but you take the lead on how you get up to the hood. How did you get your arms in. How do you go and get all of the bits of kit you need. It's a partnership and it's teamwork always.

NEIL: 19:22

So, I just wanted to -- I know Antonio has a question I want to applaud you for the way that you have talked about that. I run all the sort of policy and stuff for a large multi-national on the topics and we are in 70 odd countries and so the language around disability is buried and difficult, fraught with contradictions and so on. I think that you said you know, actually sometimes I just have to admit that we probably have to use person first language and persons with disabilities so that we remind people of our humanity and I think that is the case and that sometimes and that we use -- we took a view, that we would follow the United Nations language as much as possible because, you know what, they are UN. They have done a lot of research. They have worked with the DPO's and everything else. Let's not reinvent the wheel. At the same time, individuals, you know might choose to identify different way so we need to make sure they have that respect. But I think that sometimes we get het up as advocates about people using person first language. Particularly in certain communities, particularly in the neuro divergent community and the instinct is to go and send a verbal right hook or a snarky tweet.

MAX: 20:56

Yes.

NEIL: 20:57

And I think you explained it perfectly by saying actually we do just need to remind people of our humanity. So thank you for that and I'll hand over to Antonio.

ANTONIO: 21:12

Well, I just want to talk about you know, honesty and being honest within organisations. You know, sometimes we need to question, you know organisations who are doing things under the radar, they don't really talk much about disability. They might not talk much about inclusion. So people have some expectations but they are doing it under the radar. They are not actively promoting. So they are doing it in a kind of a subtle way. On the other end we have other organisations who are very vocal but then they disappointment. Because people say, it's so good. It's really wonderful to see all this taking place in our big glass building Head Office. But me, I'm here in the south or in the different hemisphere. And this does really reach me. So happy there. But here I can't talk with my manager about disability because otherwise I'll be under the radar of HR. How do we stand in terms of honesty when we have conversations about disability and inclusion.

MAX: 22:25

Good question. I think honestly about disability really benefits everybody. So I try to be honest about it in my interviews, to make sure that if they are not happy with a disabled person that they don't hire a disabled person because then my life will be miserable. I don't really care about how the company feels. I care about how much harder they are going to make my life for me and I think there's a lot of organisations that are all bark and no bite and they post all over social media diversity is good, we are so diverse. And then when you get in the company, it's not really that diverse. You have hired like two disabled people, a gay man and three people of colour. Everyone else is white, cisgender, able bodied, straight, et cetera. And it's like, there is a fundamental misunderstanding of diversity, where just have having a few people who are a little bit different or a little bit quirky, as some people call me, makes you a diverse workforce and it's not that's not diversity at all. Diversity is not screaming it from the rooftops and being like, we are diverse. It's actually putting money where your mouth is and just being diverse. Like diversity is so normal. If you pick 15 random people, they are all going to be diverse in some way. If I put names into a hat and I and drew some names, they are all going to have, some of them will be gay, some of them might be trans, some of them will be disabled. Like, it's just so normal to be different. And a lot of companies see it as abnormal to be different but will hire you anyway. Whereas companies need to move more towards like okay, you have a disability but that's totally normal and fine. How can we help?

DEBRA: 24:32

Well, I don't usually do this but as you were talking I wrote down three different quotes from you. I'm going to put on LinkedIn and Twitter. Honesty about disabilities benefit everyone. Wow is that so powerful. Disability is so normal. And also, it's normal to be different. What is going on? This is just so normal to do all this stuff and yet, we have you definitely an unicorn.

MAX: 25:06

Yes, that does seem to happen a lot. I do tick a lot of boxes not because I'm trying, just how the cards fell. I just happen to be a gay person, who is nonbinary, who is also disabled, whose ears don't work, whose eyes don't really work, who likes science. That's just how it's fell and I love that. It's such a rich life that I have. Like, look at all these wonderful things that I get to do.

DEBRA: 25:35

Right.

ANTONIO: 25:37

I've been seriously looking at the numbers and references about the numbers of disabled people. And apparently there is a number of 15% of the population. But if you dive deep in other numbers you realise how absurd that is. Because if you just look at the number of people that wear something like this, around the world, you have about 65% of people around the world and more or less, the number might slightly diverge by country, by country regarding the age and then on the top of that, you have people who are deaf, another number. So it's basically impossible that we can claim that only 15% of the population has a disability. Probably it is the other way around, you know.

MAX: 26:29

I think you're right.

ANTONIO: 26:30

Yes. And these type of numbers they end up contributing to the way how much people see the community, oh, well 15% and we have interesting cases as think of something, release it and did a survey and then people, usually assume, so, 5% of my workforce has a disability. And then end up realising it's 25% or 30%. I think we need to look more seriously to the numbers because they are creating a lot of misunderstandings in the way that we read the world.

MAX: 27:09

Absolutely. I think the word disability has been taken out of proportion because people think that being disabled is the worse thing you can ever be. Therefore to be disabled, you must have one of the worse conditions ever. You must have to use the mobility aid that's reserved for the worse sufferers. And it isn't like that at all. Disability, it's not the worse thing you can be, for a start and it's so broad. Like, people are like, oh, I've a chronic illness but I'm not disabled though. And I'm like, okay, well what do you mean by that? And they're just like I am not really chronically ill enough. And I am like, no, no, you are, you are. You're disabled enough to use the term disabled. Like that is just what it is, it is just like an adjective. It's like my hair is green but some of these parts, they are yellow and they are blue at the back. That does not mean I'm not green enough to call myself someone with green hair.

DEBRA: 28:07

I love that analogy.

MAX: 28:10

It is something I've struggled with a lot because when I say, people say you don't look disabled. And I'm like, what does that look like? I go I'm deafblind and people are like, you don't look like and I go great, you look it to me because I can't fucking see you.

NEIL: 28:26

Thank you for F bombing. It is usually me.

MAX: 28:29

I'm so sorry.

DEBRA: 28:30

Don't be sorry.

NEIL: 28:32

And by the way we'll not be staring in the captions. We'll leave it.

MAX: 28:39

Perfect. Deaf people should not guess which swear word, I said. They deserve to know.

DEBRA: 28:49

Exactly.

MAX: 28:51

I'm an adult deaf person, I don't need to be censored.

NEIL: 28:56

No. So many things here. So, so many things. So, we, when I talk about my own organisation, we are, as you've already mentioned diverse by our very existence, we are in 70 countries, 110,000 people. The diversity is there by default but it's our choice to be inclusive.

MAX: 29:19

Mm hmm.

NEIL: 29:20

And I think that everyone is focused on diversity and metrics and not enough on culture and attitudes and how we treat people. Now, there are certain things we do need to measure because businesses operate on, if it doesn't get measured, it doesn't get done, kind of ethos. But at the same time, I am happy. Be careful about what you choose to measure.

MAX: 29:45

Yes, it's like measure so that you know that you're doing it but don't do it for the measurement.

DEBRA: 29:52

Oh.

MAX: 29:54

Debra has got her pen running out.

DEBRA: 29:58

I got another quote. I'm going to follow Max around all day and just get quotes from her.

MAX: 30:05

That happens more than I can even say.

NEIL: 30:08

So I mean I think that you know, changing culture change and mindset change is so integral to what we are doing which is why we need people like yourself that are willing to talk about this coherently, willing to also see things from the other perspective because I think that the fact that you're able to see that other people might need that reminder, in the language and accept something that you would prefer not to but understand that.

MAX: 30:48

I would prefer they just saw me as a person from the off and like maybe they would just describe me slightly differently. And be like, oh, that's max, they are a disabled person. Like, sometimes I want to be like Max.

NEIL: 31:01

They tick our diversity boxes. And they contribute to our stats in these three columns.

MAX: 31:05

Exactly. Like, sometimes we get so caught up in the language. So for example, at university, I was the -- we'll call it the trans officer, it's a much longer name. And we were campaigning for some gender-neutral toilets. We just wanted like some to be available. The single use ones that are just like a room with one toilet in it and the door locks and they were like, yes, it's for like okay, we can do that, what shall we put on the door. And the decision about what language and what picture we would put on the door, held the project up by at least a year. I think I was arguing, just put toilet on it.

DEBRA: 31:47

Right, right.

MAX: 31:48

For the three years, and they were like, oh, but it's a bit vulgar and I'm like and then I'm just like why don't you put a picture of a toilet or just like WC.

DEBRA: 31:59

Bathroom.

MAX: 32:00

Or the stick figures, where they've got like one that's the man and one that's the woman, just put both and they're like, that might be a bit vague. And I'm like.

NEIL: 32:09

Poop emoji.

MAX: 32:10

So it's too vague and too specific, like, I don't care. I know it's not ideal that we are representing two sexes and nonbinary people maybe don't fit either of those and maybe the non-binary person identifies as the line of the middle of them. I don't care, I just want somewhere that I can go pee and I think they got so hung up on the language and I'm like you're missing the entire point.

NEIL: 32:36

Yes.

MAX: 32:37

I don't want to pee in bathroom nine and three quarters, I just

ANTONIO: 32:43

Maybe that was quite a good name. Place to go to go pee. That's it.

MAX: 32:50

Then, can you only pee or do the other thing.

NEIL: 32:53

That's why I said, just put the poop emoji.

MAX: 32:56

I was going to say that, we should just put the poop emoji.

NEIL: 33:00

Excellent. I think that's a perfect ending to the Podcast.

MAX: 33:06

Someone has to stop me because otherwise I never will.

NEIL: 33:09

On that note, I need to thank My ClearText and Amazon for keeping us captioned and On Air and I really look forward to continuing this conversation with poop emoji's so long as they are all accurately described with image descriptions and everything else.

MAX: 33:25

Perfect.