[DR. JANE MCLARTY] So a warm welcome to you to this 15th lecture, this 15th Annual Disability Lecture, and this lecture series, originally, was the idea of Mr. Ray Jobling who's sitting there in all his glory. Ray was for many years Chair of the committee, steering the Disability Resource Centre of the university. So Ray is a fellow, and previously, a senior tutor of this college, St. Johns, where the disability lectures have always been held. And the lectures are intended to recognise and discuss key issues in disability and how this impacts on the whole university population.
So I'd like to thank, Ray of course and St. Johns, for their hospitality to us, Disability Resource Centre, especially Kirsty for organising the lecture, the Equality and Diversity division of the university, and I think also it would be appropriate today to mention Professor Stephen Hawking who was patron of the Disability Resource Centre so we remember him and all the work he did in disability in the university. And of course, last but not least, I would like to thank the Vice Chancellor, who is here, and who is going to say a few words, I think.

(APPLAUSE)

[VICE CHANCELLOR] Thank you very much Jane, and it's really an honour to be here at my first Disability Lecture, the 15th, it really is an inspirational moment, I'm sure, for the entire community. As you know this year we've chosen to focus on disabled academics. Now I have to say, in all truth, that disclosure rates at the University of Cambridge for disabled academics it's only 0.8 % as of December 17th. Against a national rate of disclosure of disabled academics of 3.5 %. Those figures are obviously concerning because they suggest that the university is missing out on recruiting talented staff or staff that don't feel confident enough to disclose a disability. By not providing an environment where disabled staff feel they can be open about their experiences, I believe that we risk them not asking for the help that they're entitled to and that we do want to provide.
So I believe strongly that our goal must be to recruit and retain the widest possible range of academic staff, indeed all staff, to provide excellent teaching experiences and a range of role models for our students, and beyond that, simply to share the great talents of the community. To this end, I know that today we've invited speakers to help us all understand how we can best work together so that all are valued and included and able to participate in the life and work of the university. To find new ways of working together, I am very pleased that the university has signed up to the Disability Confident Scheme and that also the university has joined the Business Disability Forum which provides us with the framework where we can work towards an environment that is truly diverse and truly... inclusive.

And that's certainly what each of us, I'm confident, wants to aim for to make Cambridge the very best that it can be. So I'm very much looking forward to learning from this evening's lecture. Back to you Jane, thank you very much. Welcome everyone.

(APPLAUSE)

[DR. JANE MCLARTY] Right, I'm now going to introduce all of us here on this table. So, I'm Jane McLarty, I'm Senior Tutor over at Wolfson College and my claim to fame is I was the university's first disability advisor some time ago, before my hair went this colour.

(LAUGHTER)

So our first speaker tonight, and I'll introduce them in running order, is Dr. Hamied Haroon. He's a Research Associate at the University of Manchester, working in magnetic resonance imaging. He was elected Chair of the universities disabled staff network. He went on to organise with other the award-winning conference What are We Hiding?' and launched the National Association of Disabled Staff Networks, so I am pleased to welcome Hamied. And after Hamied, our next speaker will be Professor Farah Mendlesohn.
She was Professor and Head of the Department of English and Media at Anglia Ruskin University from 2012 to 2017, then she was an Associate Dean of Recruitment at Staffordshire University. She is a member of the Chronically Academic Network, has been part of access changes at three universities, and worked to provide access at conventions and conferences, so it's great to welcome Farah. Last but not least, Professor Nigel Lockett who is Professor of Entrepreneurship at Lancaster University Management School. Nigel's a senior academic, experienced manager, serial entrepreneur, and community leader. To raise awareness of dyslexia, he blogs as The Dyslexic Professor. So let's welcome all our speakers.
(APPLAUSE)

And I'll hand over to Hamied to kick off for us.
[DR. HAMIED HAROON] Thank you very much. Vice Chancellor, Dr. McLarty, distinguished guests and colleagues, ladies and gentlemen, good evening to you all and thank you for having me here. I'm sorry this slide has been up for so long, it's almost like brain washing you in telling you who I am. So I can't believe I'm at Cambridge University. I asked one of my colleagues at Manchester what was the best way to get here, and he said, Work hard.

(LAUGHTER)

It is an absolute privilege to have been invited as one of the speakers this evening and share the stage with such eminent academics on my side here. My thanks to John Harding and Kirsty Wayland for the very kind invitation. So I work up at the University of Manchester as a Research Associate in biomedical magnetic resonance imaging. However, you may not have predicted that I would be doing this job if you knew my beginnings.
My primary school years were spent at a special school in a leafy part of Manchester. The children there had a variety of disabilities. Some with complex and severe impairments. I learned some of my life's most important lessons there by making the best of being disabled. We did lots of fun things like wheelchair dancing and taking part in fierce sports competitions against other special schools locally and nationally, winning plenty of trophies and medals. But the academic stimulation I needed wasn't there.
I was really lucky, I was in the right place at the right time to be chosen as one of the first disabled pupils to attend the only accessible mainstream high school in Manchester at that time. This was my introduction to the real world. I absorbed everything high school had to offer and my favourite subject was science. Some of you may remember these programs. TV programs like 'Tomorrow's World' and 'Star Trek' fuelled my passion for science. They were portals into the possibilities of the future, some of which have already come to pass. The way that Dr. McCoy, in 'Star Trek', would have a probe, would wave a probe over an ill person, diagnose their illness, and then cure them straight away without a hitch. That made me think, "Yes I want to become a doctor."

(LAUGHTER)

Sadly though, when the time came to seek career's advice I was told there was no way I could pursue medicine with my disabilities. My mum said, "Never mind, you should become a lawyer instead." But I had my heart set on science and I achieved the best GCSE grades of my year at high school and I went on to study maths, physics, and biology at A level. During the physics class I spotted a book on the teacher's shelf that was entitled, 'Medical Physics.' This was like being struck by a divine bolt of lightning. I could enter the medical field as a physicist.
So while reading physics at university, I was elected to the Student's Union as the Disabled Access Secretary and ended up doing bungee-jumping in my wheelchair from a crane on the side of a main road in protest of the lack of access in some of the university's buildings. I don't know if you've had such protests here in Cambridge. This slide shows a snap of me, upside down, mid-bungee when featured in some major newspapers, in and around Manchester. This was the start of my brand of disability activism. So, I wanted to do an MSC in medical physics after I graduated but I had no way to pay the fees.
The Snowdon Trust however, came to my rescue at that point. And again, when this led on to a Ph.D. I'm now an ambassador for the Trust. Do you all know about the Snowdon Trust? They're a great Trust, right? You should look 'em up. Google them. So, I start my Ph.D. at the turn of the century in developing novel analysis techniques of advanced magnetic resonance imaging, in cancer. This slide here shows a healthy volunteer having a brain scan on our research-dedicated MRI scanner. The thing that looks like a doughnut over there in the background, at the NIHR/Wellcome Trust Clinical Research Facility in Manchester. I've been barred from going anywhere near the scanner.
Apparently 'cause I'm surrounded by metal. I just got stuck to the scanner. But that's OK because my work has been on developing and applying novel computational analysis on the image data required. So I was involved in a European trial of a new anti-cancer drug. When tumours grow, alright, beyond a certain size they start generating their own blood vessels to deliver the nutrients they need to spread further. This is called angiogenesis. But these new blood vessels are very immature and have holes in their walls. So blood plasma can leak out. We can measure this leakiness using MRI imaging and analysis methods, which allows to detect the extent and aggressiveness of cancer.
So on this slide here, this picture here on the left, shows a map of leakiness in the abdomen of a patient with liver cancer. The green and red colours in the white ellipse signify very leaky vessels, representing the cancer itself. The patient received the anti-cancer drug and was imaged again, two days later. And the change of colours to blue in the second ellipse on the right there signifies a substantial reduction in leakiness. And therefore, suppression of the cancer. So this was a tremendous result for us and demonstrated how powerful advanced MRI imaging could be. A traditional biopsy would not be able to give you this kind of spatial information.
While working on this project I collaborated with some of the best cancer specialists at Manchester. And even trained a qualified medical doctor in how to run the analysis software, even turn on the computer and understand the physics behind it. That's when I appreciated that the field I had entered was so much more exciting and rewarding than the doctor I originally wanted to become. So I presented my research of major international scientific conferences in some exotic locations including Cannes in France and Honolulu in Hawaii. While gorgeous place they are, all for the sake of science of course, the way that my academic abilities were the only thing that mattered, regardless of my physical impairments convinced me to stay in academia.
I was very fortunate to get my first research associate job, shortly before I finished my Ph.D. in the same department 14 years ago. So I've worked on successive fixed-term research projects since then. I acknowledge the generous support I have had from my department and line managers over the years, which has enabled me to stay in Manchester. Many people move from place to place in order to progress their academic careers, but that was impractical for me. Support is crucial. The integrative support I have is so important to me. Let's me fulfil my potential with independence and confidence. So I need support. Without it, I could not have studied or do my job.
As a student, I had the Disabled Students’ Allowances which has suddenly been restricted for future Hamieds. And additional support from the Snowden Trust. On becoming a member of staff, I suddenly lost all of that support. Thankfully my HR contact pointed me to government scheme he had heard of, which supported disabled people in paid work called Access to Work. Have you heard of Access to Work?
[AUDIENCE] Yes.
Good. This scheme is still very poorly promoted. It's almost like the government don't want disabled people to know about it. Access to Work allowed me to employ my personal assistant. Damian, over here, very glamorous. To help me with everyday physical tasks I couldn't manage at work. And to help me go to conferences, which is a vital part of being a researcher. Even if the location isn't so exotic. Without this support, I would literally have to stay at home. Access to Work is described as the envy of the world because it enables disabled people to work and therefore contribute to enrich society.
My current research project is on new ways of diagnosing dementia earlier. The brain images on the top row of this slide are of a healthy older person. So compare those images with the ones on the bottom row. Which are of a person with late-stage dementia, reflected by the shrunken brain. The kind of brain is disappearing a little bit. And the much larger, black cavities. We have a chance of treating dementia, if we can spot it early enough. So we are developing cutting-edge magnetic resonance imaging methods to detect the very early microscopic changes in the brain, that lead on to this devastating condition.
The images on this slide characterise the microstructure of the brain by probing the diffusion of water molecules, using MRI. On the left, in human subjects and on the right, in a rat. The benefit of using rats is that we can breed them to have dementia and can image them repeatedly during their lifespan. To learn what changes occur and when.
So I am now, fortunately, the founding director of a spin-out company from the university called Quantima. Which aims to put our sciences practices and have a positive impact on the lives of tens of millions of people around the world, who are predicted to suffer with dementia in the decades ahead. The company is supported by the University of Manchester and IP Group. So did my disability activism start with a bungee jump? No way. I helped to start up and lead the university's disabled staff network. We were instrumental in making our university one of the first to provide dedicated support for disabled staff, along with the support...already there for disabled students.
In June 2014, we had the first national conference for and about disabled staff in the higher education. Institutions from across the country sent representatives. And we called the conference, 'What Are We hiding?' This slide shows our university's president and vice-chancellor. Dame Nancy presenting the Inaugural 'Making a Difference' Award, to Melanie Sharp and I for organising this ground-breaking event.
In November 2017, we heard... we held the first public lecture event in honour of the late Lord Morris of Manchester. Alf, as he was known, was a Manchester MP from the late 1960's to the late 1990's and became the first-ever minister for disabled people. We were thrilled to have Baroness Tanni Grey-Thompson as our special guest speaker. She was absolutely awesome. The picture on the left of this slide shows Tanni in action. About five months later I was invited to be the guest speaker at her reception for the Snowden Trust at the House of Lords, where Tanni was my host, on the right.
I used our 'What Are We Hiding?' conference in 2014 to launch the National Association of Disabled Staff Networks, which I now chair. This is a super network connecting and representing Disabled Staff Networks in the tertiary education sector. Across the UK and beyond. Open to any individual or organisation interested in promoting the equality of disabled staff. Our mission is to act as a collective platform. To share experiences and good practice. And examine challenges and opportunities.
Oh, sorry. Got to say something else on that. I have the honour of working with some of the most impressive disabled leaders in the sector, who have taught me so much about resilience and innovation. The National Association is proud to support a special conference taking place at UCL tomorrow. Organised by Nicole Brown and Chronically Academic on ableism in academia. Tickets are sold out for the event, but it will be live streamed so please google it and you'll find out more.
As a disabled child in a traditional Pakistani family, my extended family and community never expected me to amount to very much, a destiny my parents refused to accept for me. And they always pushed me, sometimes literally, to work hard and achieve the best with my abilities. These are the cuter pictures of my family. My wife, Humaira, is my rock. She keeps me headed in the right direction and stops me falling, sometimes literally. We have two children, a son Hamzah and a daughter Haya. Hamzah is now eleven, Haya's ten, and both are disabled with different impairments. Their mum has made them both promise to at least achieve a Ph.D like their dad.

(LAUGHTER)

And then they can do whatever they want. So Hamzah said that after doing the Ph.D he wants to be a bus driver...

(LAUGHTER)

..because he likes to travel, and then maybe get the Nobel Peace Prize, and Haya says that she wants to win the X-Factor.

(LAUGHTER)

Whatever they aspire to do, we have every confidence that they will achieve their dreams. I can't finish without paying tribute to Professor Stephen Hawking. I was dreaming of meeting him here this evening, with him being the patron of Cambridge's Disability Resource Centre and was gutted last week when I heard the news that he had passed away. What an exceptional life he had and what remarkable accomplishments he made. An absolute legend. This slide shows Professor Hawking starring as himself on an episode of 'Star Trek: The Next Generation' playing poker with Einstein and Newton, assisted by Commander Data. Professor Hawking made me feel so deeply proud to be disabled and a scientist as he brought those two parallel universes together. For me, he was the epitome of achieving success as a disabled academic in the 21st century. Thank you.

(APPLAUSE)

[DR. JANE MCLARTY] So we will press on to Professor Farah Mendlesohn.
[PROFESSOR MENDLESOHN] And I actually feel slightly embarrassed to be following that astonishingly wonderful presentation, thank you. My story is very different. I've really struggled to think about how to put this together. Because in many ways I don't associate my career with my disability, but then when I was talking to somebody today I realised that, that's not quite true. Because if I was to define my, how I ended up where I did, it's a childhood lived in bed. I started to get sick at the age of eight, and I'm afraid some of this is going to be a teensy bit graphic.
I woke up one morning, you need to know I have a kind of mother who sent you to school with measles 'cause if you were really sick the teachers would send you home. Alright? So I woke up one morning and I was sick, and my mum said, Oh you'll feel better now. And then I was sick again and she said, "Better out than in." And by the time I'd been sick four times, and was on a trolley in Birmingham Children's Hospital in isolation, she thought maybe there was a slight problem, OK? And in fact it was there that I was given a copy of 'The Lion, The Witch, and The Wardrobe', and where I discovered Fantasy and later Science Fiction. We have that in common. And what then started to happen, is bit by bit by bit, my health started to deteriorate. And when I was 11 I started getting migraines.
Now when most people think of migraines they think of something that happens once a month, say, or once a week. You have a really bad migraine, you throw up, you feel better. My migraine wasn't like that. By the time I was 13, I woke with it and I went to sleep with it. And the only difference might be that some days it was worse than others. And cheese and chocolate and bread and orange juice and later alcohol, and oh my God the list was so long, made it worse but skipping all of those didn't stop me from getting it. And it was exhausting.
So that I would go to school and Monday and Tuesday I would make it through, and by Wednesday I was too sick and went home at lunch time. I'd stagger through Thursday, be worn out by Friday and lose most of the day. And this was the 1980's, and this is gonna sound weird to you, but people didn't believe in chronic illness in those days. So this was all being treated as separate distinct illness, and I got labelled school-phobic. Now this was in the middle of the Pindown Regime and thank God they realised that I was missing the subjects I really loved because I know kids who ended up in Pindown. OK?
Getting labelled school-phobic was bad news. I was quite lucky. But it was always treated as somehow slightly my fault. Now quite separately, I also hurt my back very badly and that's still a problem, I have a lot of trouble with my back and if any of you have had a back injury, it never really heals, and it can affect your extremities and, it's worse, it was like walking... frankly I get The Little Mermaid. Alright? I know what it's like to walk on knives. But both of these symptoms in the 80's was shorthand for 'scrounger'. Backache, you were claiming Social Security without a reason. So I got very used to lying.
I also spent a lot of time at home, and part of the reason I put this up is I'm a very ill-disciplined academic in some ways. My interests are all over the place and I realised today some of that is because I was essentially home-schooled. I stayed home and read and that shaped the development of my career, so I've always been a bit of an all-rounder. But by the time I got to the end of my fourth year at school, or essentially I didn't, we'd really got down to maths, history, and English and everything else went by the board, least because I used to throw up in the chemistry lab. But like I said a bit of graphic stuff here. But just, it was awful, it was constant and I only actually have four O levels, OK, and for those of you who are old enough to remember, two CSE's and I got those because we knew I had to have a language and a science to get to university to read history. And one of the things I would say is that compulsory but completely unnecessary requirements are a real problem for people with disabilities.
I never used my languages. My maths has been far more use over the years. But I had to have them. The rest of my O levels we just decided I wasn't going to bother with because by this point it was looking really hairy. So I'm going to skip forward a bit, but what came out of that was what we call Academia and the Butterfly Mind. Now I use that phrase because that's what my undergraduate supervisor said to me when he said I'd never get a Ph.D. I would note, I forgave him enough to marry him.

(LAUGHTER)

But he had a point. In history, the two basic types of historians, lots of people in-between, but you get the people who go deeper, narrower, the straight path. And then you get the people who kind of go broad, wide, wondering. I'm at the extreme end of that. And the image I often use when I'm talking to people is dogs. You have the pointers, they're the kind of people, and I genuinely have a friend like this, she wrote an easy on Fairy Tale when she was eight. Her Ph.D was on Fairy Tale. Everything she wrote was on The Fairy Tale. She got, I think her Ph.D was on 'Little Red Riding Hood.' Absolutely focused.
I do have a deep fondness for basset hounds. If anybody's ever had a basset, Oh! There's an interesting smell over there but there's another really interesting smell over there and maybe I should go for that one." That's me, OK. There was always something distracting me. But I do think it partially comes out of that. And despite that, I can actually trace some paths in my work. So I'm very interested in peace and conflict resolution and the language of peace. I worked extensively in science fiction. I work on rhetoric. I work on the construction of community through the language they use. And that comes from my work on religious history that I then applied to my work on science fiction and fantasy.
I'm currently working on historical fiction. I'm working on a book on children's literature about the English Civil War. But I'm a historian, so I start in 1720 and I now have 160 titles. This is not your standard literary critic approach. But I'm also very heavily involved in science fiction convention running, and I do a lot of work on access support for that. So I ran access support for the World Science Fiction Convention in Finland last summer, where everything from making sure there are chairs available for the right size. Don't use chairs with arms, it really causes problems for access. Everybody from crutches to people who use scooters cannot suddenly get in the seat. Providing sign, making sure lip readers could sit in the right place. And we actually had one person come in on a flat bed, and that was brilliant. So making sure that support was there.
Now, to go back slightly. So HEFCE statistics. This has been passed around a lot and I wanted to raise it after talking about my background, which I'll come back to. Because everybody's... the rhetoric around this at the moment is about how we have lots more students with disabilities and mental health problems and this is because there are lots more pressures in modern students, we're all snowflakes. And I just don't think that's what's happening, and I think all three of us are testimonies to a different narrative. Which is that we are seeing more disabled students because we are seeing more support.
If I had not been labelled smart and university material, I would've been allowed to drop by the wayside at 16. There is no question about it. I got turned down by three sixth form colleges. I went to the only one that would accept me. I got three grade A's at A level. I mean now that seems trivial, but do you see what I'm getting at? Just the fact that one college was willing to take me. Now I'd have been supported at home. I'd have been given work to do and also nobody ever added any extra pressure of telling me I was making it up. So I think that's different. I'm serious... secondly, the continuity rates. There's clear evidence that the more support you give people, the more likely they are to continue. So one... and this matches what you were saying. Students who get the allowance have a better chance of continuing than those who don't. And my equivalent to that was having a very supportive personal tutor. Like I said, I married the man. But I still remember when the secretary called me up to find out why I hadn't been in class for two weeks. Well the answer was I was just too sick.
But this at a time when the University of York and I'm sorry to name and shame, one of my friends got sick, had to take time out and she was escorted off the premises. Because god forbid she should use the library for one more day when she'd taken leave. The simple lack of support. So the more we support people, the more we get disabled staff. And disabled Ph.D students. And I do remember when I was at Middlesex... I'm mildly dyslexic, it's not severe, but it does slow me down. And I think one thing people don't forget is one of the big costs of disability of any kind is the extra time everything takes.
I got handed a wodge of material about that thick with students' grades and told I had 20 minutes to go through them. Now give me a ruler and an hour and no problem. I'm actually rather good at maths. But there was no way I could do it. And when I said I'm dyslexic I got the, “But your staff, how can you be dyslexic?" And that's been fairly constant... so right, back to me. One of the things I want to talk about is the restrictions. And I've already mentioned what was compulsory and why. A whole range of universities weren't open to me because I didn't have two languages. I didn't have two sciences, and nobody gave two hoots why not. I had to have a kitchen, I had to self-cater. And an awful lot of universities in the 80's insisted on meal plans or had the most primitive self-catering. Sounds mild, but by the time we got down to possible universities that did what I wanted to do, we were down to only ten choices. So I get through university and we realise I can't hold down a proper job. Every time I'd try, I'd get sick. And that my dears is how I ended up as an academic.

(LAUGHTER)

Which I wish to say, I do not think I could do it now. But at the time, the flexibility of research and the flexibility of academia made it possible. So from to 1993 to '97 I'm working as an academic and I'm working on my Ph.D part time, which wasn't that normal at the time. And my health is failing. My joints are starting to give way, I can't hold a pen by this point, I'm walking with a cane, I'm starting to contemplate a second cane, my weight is fluctuating up and down, my migraine is constant, I have zero social life, noise overwhelms me. I'm not having much fun. But I'm constantly being told that there's nothing wrong with me. I think I remember somebody saying “You shouldn't be ill”. And I thought, "Hang on, there's no such thing as 'should'." And one of the worst comments... and it's a testament to how ill I was at the time that I didn't question it, was a doctor said, You're eating normally and losing weight so there can't be anything wrong with you.
So in 1997, I finished my thesis except for the footnotes, we go out for a takeaway, I get food poisoning and I get sick. And I spend the entire summer in bed losing weight, and this is where my... by this point, partner comes in because if he'd not done my footnotes, I wouldn't have finished my Ph.D. You know, we've talked about support. I owe him so much.

So December 1997. First of all, my diagnosis actually came from a friend whose wife had celiac at the time. It was considered to be one in 1,500 and I was told it was rare. I organised my first conference, got my celiac diagnosis and did my viva in the same week. I weighed six and a half stone. So very, very quickly. I have one year of feeling brilliantly healthy when we realise I'm going deaf and we discover the family deafness is not industrial injury, because my uncles had been in the artillery during the war, but hereditary. And I start noticing the effects of the growing illness of... my joints are not great. If I don't walk with a cane now it's because I'm wearing insoles. I do physio constantly back to the time. But all these things affect stuff. I just want to go through.
The key thing is, when I became a manager, I wanted to be better than the treatment I'd received. One of the things I did was to support my staff. We had a figure of 0.08. 12 % of my department had what I would call affecting disabilities. Things that seriously impaired their ability to work. And we made quite a lot of headway in improving their condition. Just going through very quickly. These are the things that I live with. Need to exercise. Having to be careful. I've been to job interviews where I've looked at the buildings and realised I would be back to being severely disabled.
One place I realised I would not be able to get above the first floor. Diet. I've been in universities where the nearest place to shop is a 30 minute walk away with no transport. That means I have to carry three meals. I can't stay late because if I don't cook it, I can't eat it. Oh, I have dairy intolerance as well, that developed later. There is almost nothing I can get out of a vending machine except a packet of plain Walkers crisps. It doesn't sound much until you're stuck. And disclosure. Oh, and I developed diabetes just a few years ago, which also runs in the family. I was furious.

(LAUGHTER)

Was so angry. There I was desperately keeping fit and I still got it. Paranoia. What do you admit and what do you don't? So, I'm currently unemployed by choice. By sitting here declaring I am deaf, I'm making myself less employable.

And one of the things that really caught me out and Sally, my colleague back there, knows about this, is the new classrooms. Classrooms with sound baffles designed for deaf students, which is... and I discovered this by sitting where the students were sitting and discovering I could hear the speaker. But if I stood up with the lecturer I couldn't hear the students. Circular classrooms where students were out of my line of sight. All of this made it really difficult. So really, my last point is that all of these things present choices, consequences, stress, and even for somebody like me who... let's be honest I got the medium length straw. Alright, my life is not bad, I enjoy it. But the time penalty, the planning penalty is there all the way through, and it's really easy for able-bodied people to see somebody coping and not register just how much effort goes into that. Thank you.

(APPLAUSE)

[DR. JANE MCLARTY] Thank you Farah, thank you. And now Professor Nigel Lockett. Over to you.
[PROFESSOR LOCKETT] Thank you. So I'm going to walk around partly because I'm at the end, this is week ten at Lancaster so I've been teaching during this term and I feel more comfortable moving around than sitting down. So if you'll excuse me. So I am... There we are, so I thought what I would do is just share three images with you which perhaps tell a story and maybe focus on much more that far image on the right-hand side. And what I really want to do is to talk about dyslexia and the decision to disclose that I was dyslexic. So it's only been a year, since I started blogging as the Dyslexic Professor. And this is the first time that I've spoken to a public audience about being dyslexic. So, this is a new experience tonight for me. So, I'm moving from a digital platform to a wooden platform.

(LAUGHTER)

So I thought I would start by preschool. So this is me, I'm not quite sure how old I am there. I'm probably about four or five, so this is preschool. And I would be characterised as, at that stage as being creative, I was constantly exploring, I was relatively gregarious, and I would say judging by that photograph I was quite happy. And that would be before there was any real engagement with the written word. So I would say that there'd be many people might think well yes that was maybe the early childhood that you may have experienced in different ways. So what happened for me is that I went to school, I went to school in an environment.
In fact, this is me, it was boarding school, so we just add another slight layer on there. But this is me not looking quite so happy, and I thought I would explain to you what the education system in my day did to me as a child. And how I think that's affected me as an adult. So the words that I would use to describe that experience of 12 years, of really being... ..unaware of why I was experiencing difficulties. So I wasn't diagnosed as a dyslexic, until I was 19. And even then, it was probably the first time I'd heard that word. So I wouldn't have been fully aware what that meant, but what it meant the school to me was that I... I was constantly afraid of being asked to engage with words. Because I was struggling to do that. It meant that I constantly experienced failure throughout my educational system. I remember being held back a year when I was probably about ten. So I repeated a year. I remember not being...being told that I wasn't being put forward for the 11 plus. I remember GCSE's as a very public...event, of not passing the ones I wanted. And I remember failing my A levels. So all the time there was a constant reinforcement by the educational system that I was failing. And you don't need to be told, more than a couple of times that you're stupid, or you're thick to start believing it. Particularly when you're sort of eight or nine.
What I did is, I started to develop, very early on, strategies that help me to deal with that. And one way was to joke. So I would be, the joker in the class, and one way to diffuse the tension to deflect away from my lack of literacy was to joke. And we'll see how that may have played out a little bit in a moment. And of course, well not of course... Many ways I found school quite a sad time for me. And one at which I became increasingly isolated. So, when people talk about their school days, and I do hope you had some lovely school days. I don't often think back with fondness. So what did that, what did that do to me? What did 12 years of that conditioning do? I think it, it made me into the person I am. And I'm really very positive about where I am today.
We'll see in my final slide. So what it did, is I think that being afraid meant that I constantly scan every environment for danger. So I'm constantly aware that at any moment my lack of literacy, and I'm a lot more literate now than I was when I was eight, could be exposed. And the way to deal with that is to constantly be alert. So I'm always looking for little things that might impact on me. My failure, I think, has made me very resilient. You get used to, coming back because you don't have a choice. Yes, you fail that exam, yes you've been held back a year but life goes on and you step back into it and your friends around you, support you. So I think I became a more resilient person.
My humour meant that I was quick thinking, to spot the joke, to spot the opportunity, to get a laugh means you've got to think pretty quickly. So these, even at this stage, I think you can see that I'm constantly looking for things that might be interesting, I've got a level of resilience that's being bought out of dealing and overcoming obstacles. I've developed a quick-thinking way of spotting the opportunity to lighten things. And even though, obviously sadness is not a joyful event what it does do, I think, it helps you be empathic. So when you've suffered in any environment in any position, you understand other people when they're suffering. And that means that for me, it means that I'm constantly thinking what it might be like for someone else. If I were to put myself in your shoes, what will that be like. And so for me, I think these are really positive characteristics.
So out of adversity for me, I would say that these have informed the adult that I've become. So a year ago, I decided to disclose my dyslexia, having kept it a secret for 55 years. And I did that, really because I thought, I was fed up. I was fed up of being... from hiding. From what was, I recently realised, were parts of the positive part of me. And I didn't want promotion, I don't want promotion. I decided I couldn't be fired, I may be a bit delusionary on that one.

(LAUGHTER)

And I thought if you're gonna do it this is the moment. So I remember emailing my dean and the head of communication of the university saying "Tomorrow, I'm going to publish this blog." Just before Christmas. I wasn't asking for their permission. I would thought perhaps they should know. And what's happened has throughout been extraordinary it's been a really interesting experience for me to disclose. No one else at my institution, if they've approached me and said “Nigel thank you, I'm dyslexic, I've no intention of disclosing this." I've had colleagues approach me and say, “My goodness I'm so pleased you've done this because my children are dyslexic, my child's dyslexic” and we thought, oh my goodness, this is really awful. What are we going to do? So for me, it's been really interesting to disclose that. I'm still in the job, which is good. I think what my dyslexia makes me now is really determined. I'm determined to move beyond the notion of disability.
For me, dyslexia as a minimum is a learning difference but actually for me increasingly now, I think it's a superpower. And imagine if you were to gather all the dyslexic students across this university together, what collective superpower might bring. And many of us now are beginning to think about this as being less around disability, beyond the notion of difference and now thinking about advantage and superpower. I do feel liberated, it's so much easier, my life now, that I can say when someone asks me to do something, hands me a piece of paper and says, Nigel, will you introduce the speakers from this piece of paper?" I say, "No, I'm dyslexic. I won't do that but I'd be delighted to introduce the speaker." And I do a lot of external engagement for my university but I would never read from a script. So I feel determined about my place in my university, I feel liberated about the fact that I now share this openly.
I now celebrate the fact that I'm a picture thinker. I'm a visual thinker, to me that is so powerful. People come to me with really complex problems, I get involved in a lot of leadership opportunities because the world is full of problems. It's like a playground for me because, as a dyslexic, my superpower, and this is true of many dyslexics, is to think big, to think visually and communicate solutions. And for me I think that's really important. But I started by saying that I think this is a story of survival. So, people might say to me, Oh Nigel, you must be an expert in dyslexia. And I say, "No, I'm not a professor of dyslexia, I'm a dyslexic professor”. And what I am is, I've survived and to me, I've survived into this point. So, my question to myself is 'what do I do about that?' And certainly my own view is that my own institution in my own community, I'm very happy now to talk about the fact that I'm dyslexic, how that affects my work, what I do to mediate that, to support my literacy and also now, increasingly get involved in things which have a much wider impact.
So, founding a new charity, looking at the positive aspects of dyslexia, how we might bring people who are newly diverse together, to start dealing with some of the big challenges in our society. So, of course, we do need people who are not dyslexic to be involved in that but also, I would say, need to celebrate the fact we can engage as dyslexics in those big societal issues. So, I think what I do, I might stop here because I know there might be some questions. I'm certainly very happy to talk about the fact that I'm dyslexic and how it affects me in my work and beyond, thank you.

(APPLAUSE)

[DR. JANE MCLARTY] Thank you, thank you Nigel and thank you for all three of our speakers. We have overrun but I think it was worth overrunning, wasn't it? It was worth hearing those stories.
[FARAH MENDLESOHN] Sorry.
[DR. JANE MCLARTY] No, don't apologise please. So, we're gonna take time for some questions. There are refreshments outside at half past, but, you know, nothing's hot, nothing will go off so we'll just...

(LAUGHTER)
Any questions? Any questions? Right so, gentleman in the denim jacket. Wait till we get the microphone, thank you.
[MAN] Hello, this one - I think your name is professor Hamid?
[DR. HAMIED HAROON] I'm not a professor (LAUGHS)

[MAN] Sorry, I beg your pardon. Hamied, yes. A thought flashed through my mind which sticks with me when I saw that newspaper cutting. What was going through your brain when you were hanging upside down in your wheelchair on the bungee cord?
(LAUGHS)

[DR. HAMIED HAROON] To be honest with you, my eyes were closed and I was screaming the whole way
(LAUGHTER)

But the event itself, actually, this was... So, our university campus is bounded by two main roads. One is Oxford Road and the other is Cambridge Street. So, we tried to, you know, kind of... [MAN] There is irony there.
[DR. HAMIED HAROON] (LAUGHS) So anyway, on Oxford Road, the buses actually stopped to watch this crazy guy in a wheelchair doing a bungee jump and that's how it got into the newspapers and its spread as far as Germany, I think I heard, because people were amazed at, you know, how stupid can you be. But it raised that notion that disabled people can do those things if you're given the opportunity and have that support in place. Thank you for that question.
[MAN] Thanks.
[DR. JANE MCLARTY] There was another question, I think. Lady at the front.
[WOMAN] Thanks, so just a general question.

So, if someone is just so disabled that... ..it is difficult to see anything good in it and to benefit from it so, what would you say to someone like this?
[DR. JANE MCLARTY] So that question was, if someone has a disability that's so profound it's hard to see anything good.
[WOMAN] Yeah.
[DR. JANE MCLARTY] What would you say to that person. So, it's that for all our speakers? Who would like to...?
[PROFESSOR MENDLESOHN] We don't get to make that decision. It's tricky, I have known people with, let's use the word 'issues', that I would regard as mild who could not handle them. I have known people with issues that are severe that for them it's just their body and they're good with that. So OK, I can only really speak for my experience. Of all the things I have experienced, the one I couldn't handle was the back injury and yet on paper it was mild and it was because the pain was excruciating and nobody was talking about chronic pain when I was 15 and if you would've given me a way out at 15, I'd have taken it, OK? And nobody saying, “It will get better” at that moment would have helped, I'd had probably hit them. OK?
But somebody handing me what I actually wanted I asked for, useful pain killers, might have done. So, I think my answer is actually, ask people “What would make a difference to you?" Don't try to reassure, don't try to say, “Oh, it will get better." Say, "What would make a difference to you this moment in this second?" Because I still remember, we got my migraine under a kind of control in my 20's and even having - a new drug came out, Sumatriptan, anybody know it? It was like rainbows coming out. It was a horrible drug when it first came out, you took it, you threw up, and then it was wonderful, and it gave me a day off the migraine and it doesn't sound much, even now I get emotional, it's opened this chink in my world. So, ask somebody what it is they want.
[PROFESSOR LOCKETT] I'm not sure I can really answer your question. For me, personally, I do wake up each day in a positive frame of mind and I've always done that. So, even though I might have experienced lots of difficulties, each day to me is the start of a new opportunity.
[DR. HAMIED HAROON] So, there are people with profound impairments, like the example I gave right at the end, Professor Stephen Hawking is an example for all of us. Just with his eye he's able to pick out letters on a screen or he was... and that way be able to communicate. So, as long as you have the support in place, I believe anyone, however profound your impairments are, I think that the thing that disables us is when support is not there, those opportunities are not in place. Do you see what I mean? But as profound as your impairments are, you can still make a valuable contribution, I believe.
[PROFESSOR MENDLESOHN] Can I add one extra comment? I have some friends who have a daughter with Aicardi syndrome. I don't know if anybody knows about it, it's extremely rare. It only affects girls and they're essentially born with part of their brain missing. Her parents would not give her up for the world. She...I can't communicate with her but she plays with her My Little Pony, she smiles, she enjoys her life. Who am I to say she doesn't have a sense of purpose?
[DR. JANE MCLARTY] Thank you. Any more questions?
[MAN] Thank you. There's an awful lot there which I could comment on, but I don't want to take too long. I'm actually a retired university careers advisor. I wasn't the careers advisor who told you that you couldn't become a doctor. If somebody did, I apologise on their behalf. I also have a stammer. Which is a mild disability recognised by the... ..various equalities acts. It's a communication issue, so I have a lot of sympathy with, sorry, sympathy is the wrong word and I didn't mean to sound patronising. But I understand all you said about communication and speaking. I can't work to a script either. And it's got me into trouble at work because some of my bosses expect me to work not just to a script but to their script. And I won't mention the university, but there was a university not very far from the city where I was working and I was hauled before my head of student support and was told If I had known about your stammer, Colin, I wouldn't have employed you. And this is a caring professional, for God's sake. So, I'm encouraged by the fact that we have here three academics who have experienced various disabilities. And I would say that...

I was going to ask you what you thought you might be doing if you hadn't got the disability, but that's an unfair question. I was told 45 years ago by a careers advisor, Don't become a careers advisor, Nosh, you couldn't cope with it with your speech defect. I did the job for 45 years, and I think I was relatively successful. So, it can be done. What I've noticed, and I don't know whether this has happened to you. Nigel, you said you're not professor of dyslexia, you're a professor who is dyslexic. I became, within my profession, the kind of in-house guru on stammering. So I'd get university careers advisors ring me up at home and say "Colin, I've got he's got a student who's got a very bad stammer, could you help me help them?" So, there is a job that I needed to do. Sorry, I am rambling a bit. I do apologise.
[DR. JANE MCLARTY] Do you have a question for our panel?
[MAN] Well, the question really is, I think, is it to do with increasing acceptability within your own institutions that you could do your job and do it well? And perhaps, do it even better than you might have done otherwise?
[DR. JANE MCLARTY] Right. So, is there an increasing acceptability of staff... Is their increasing acceptability or openness to staff with a disability in academic institutions?
[DR. HAMIED HAROON] So, I think... When it comes to visible disabilities such as the disability I have and everybody can see that about me, then I think, where I work anyway, at the University of Manchester, it is more accepted and people are very willing to support and quite proactive in that way as well. In terms of getting ramps organised, disabled toilets, stuff like that.

In my experience it's people with hidden impairments, with invisible disabilities, who really struggle. So, my friend who I showed us both being awarded for the conference we held, she has mental health problems. And staff with mental health conditions fare much less well. At the universities. And there's a lot of work to do there to raise awareness and understanding of those kind of issues I believe.
[PROFESSOR MENDLESOHN] I think there is more support for you once you're in the post. But I don't think there's enough recognition of the kind of choice constraint when you're applying for posts. Or the stress of disclosure. I found myself in one interview, I mean, I'm not going to name and shame universities, I was being interviewed by 20 people! There was no way I could function. Now, I actually also disclosed, and part of my background is in lesbian and gay activism, so, for me, disclosing being upfront, being a model, was always part of the game.

And I've dealt with some quite hostile reactions. Not least because... OK, so one of the changes for me is that they now know that celiac is an autoimmune disease. Now, what that means is now I only have one illness where I used to have about six. OK? But in the days when I appeared to have six because celiac was just a food intolerance, I would get comments like, “How can you have all these illnesses?" I have asthma, I have arthritis, we now know they're all one. And I found that very hard. And the deafness, oh heavens. Right, there is a difference between congenital deafness and a progressive hearing impairment. My friends who have congenital deafness are more in your situation. They have a clear statement of need.
Now, first of all, I have to change what I can do every year. I have to adapt to it. The space before the update of my hearing aids is problematic. And people can get really intolerant. Actually, students can be a problem. Because they don't get it. And it's not visible, and also it's highly individualised. And that can be an issue. People will tell me they know how to cope because they know somebody with a hearing impairment, but that person's hearing impairment may be completely different, so, I'm sorry to pick you out, sir. I had problems with this gentleman, not because he has a stammer, but because he has a low voice. To me, you sound lovely and I have no idea what you're saying, because it's just sound!
[MAN] (INAUDIBLE) ..too loudly?
(LAUGHTER)

[PROFESSOR MENDLESOHN] No, volume helps me not one bit. So, it's that kind of thing that I struggle to communicate and really struggle to get people to cater to. And when it comes to looking for a job, you're constantly having to decide what to disclose, and I advise people who want to use the disability tick scheme, here I'm going to say something really unpopular. Under the two ticks disability scheme, if you meet the criteria set, you are guaranteed an interview. The problem is that you won't be the only one checking that box. Which means, actually, you may be making life harder for yourself. Because if they have six people under that scheme, they are going to scrutinise your application to decide which two of the six truly meet it. And you might actually be better off not checking it. OK? And the way it works is problematic. I'll stop there, but I do think it's very complex. To answer your original question, I would have been a doctor. By the way. Unlike my colleague here, Nigel, I would have had a completely different life.
[PROFESSOR LOCKETT] Yes, I think I'll just come at this from a slightly different angle, which, as you say, I've never disclosed my dyslexia as part of a recruitment process. It was only going public was my disclosure. So not on a form but on a platform. But what I would say is that for me now, I really would like to reposition dyslexia less as a disability but more as a difference. And ultimately, I think I would like to celebrate dyslexia and other forms of neural diversity in a much more positive way. Because I think being dyslexic, other types of neural diversity actually increase the diversity of our organisations, and therefore the diversity of our thinking, and if we've got really complex issues to deal with, you need a really diverse group of people to deal with that. And why not include neuro diversity in that?
[DR. JANE MCLARTY] Thank you. Right. One last question from the lady there in the front, and that I think we really will have to end.
[WOMAN] Sorry. Not so much a question, but just picking up on neuro diversity in the workplace. The CIPD publish a fantastic report on how we should be dealing with neuro diversity in the workplace. It only came out about a week or a fortnight ago. I think it's on the CIPD website. So, I just thought it was useful to say that.
[DR. JANE MCLARTY] Thank you. That's the CIPD report on neuro diversity out on their website. Thank you. Right. I think we will end there, and let's thank our guests again for a really interesting session.

(APPLAUSE)