1 00:00:01,130 --> 00:00:06,710 Good evening, and welcome to this year's annual Disability Lecture. 2 00:00:06,710 --> 00:00:12,380 I still haven't worked out what's more nerve wracking, doing these lectures in person or doing them 3 00:00:12,380 --> 00:00:21,590 virtually. But I think none of us would have imagined a year ago that we would be back here online on Zoom. 4 00:00:21,590 --> 00:00:25,310 Hopefully, hopefully, fingers and toes crossed, by next year 5 00:00:25,310 --> 00:00:36,950 we can all get together meeting in person again, although obviously we have appreciated the fact that online events do also increase accessibility. 6 00:00:36,950 --> 00:00:41,120 So we are we are really pleased that you are here with us this evening. 7 00:00:41,120 --> 00:00:46,490 In a moment, I will hand over to our Vice Chancellor, who will introduce our speaker. 8 00:00:46,490 --> 00:00:52,340 And then after that, we will have a lecture by Dr Hamied Haroon. 9 00:00:52,340 --> 00:00:58,220 We are then going to have a five-minute break before we get on to the question and answer sessions. 10 00:00:58,220 --> 00:01:07,310 And we will finish by 7:30. Just a few housekeeping announcements before we do begin. 11 00:01:07,310 --> 00:01:12,680 We are recording the session this evening and there will be recordings available. 12 00:01:12,680 --> 00:01:17,810 You will all get an email within about a week or so telling you where to get that, so you 13 00:01:17,810 --> 00:01:23,330 can either watch again, or share it with colleagues or friends who couldn't make it. 14 00:01:23,330 --> 00:01:33,260 This obviously is a Zoom webinar, so you won't be able to use your cameras or to physically speak in the session, 15 00:01:33,260 --> 00:01:40,100 but you can use the chat function to send comments or messages to participants, 16 00:01:40,100 --> 00:01:44,210 or attendees, or both. If you select the appropriate option in the chat box, 17 00:01:44,210 --> 00:01:49,640 then that will happen. If for any reason you have an issue with Zoom during this, 18 00:01:49,640 --> 00:01:56,360 if you'd like to raise your hand, then one of our moderators will do their best to assist you. 19 00:01:56,360 --> 00:02:00,830 Also, we do have captioning available for this lecture this evening. 20 00:02:00,830 --> 00:02:05,390 It's been provided by 121 Captioning. If you need to find that 21 00:02:05,390 --> 00:02:15,550 and you haven't done that already, if you go to the Zoom menu and select closed captioning, then that should come up with the transcript. 22 00:02:15,550 --> 00:02:18,950 Also, as I said, we'll have a question and answer session, 23 00:02:18,950 --> 00:02:30,650 so if you would like to put a question either whilst our speaker is speaking, or obviously at the end, then you can put that in the question and answer box. 24 00:02:30,650 --> 00:02:38,710 Your questions will come up anonymous and they will be moderated by our moderators, but we will know obviously who they're from. 25 00:02:38,710 --> 00:02:46,760 And finally, our speaker will be describing the slides as he goes through, so for those of you like myself with 26 00:02:46,760 --> 00:02:52,850 a visual impairment, that should enable access. If there's any other access issue we haven't covered, 27 00:02:52,850 --> 00:02:58,610 please do contact the moderators during the session. That's all for the housekeeping. 28 00:02:58,610 --> 00:03:05,370 So I will now hand over to our Vice Chancellor, Professor Louise Richardson, who will introduce the speaker. Vice Chancellor, 29 00:03:05,370 --> 00:03:09,770 over to you. VICE CHANCELLOR: Thank you very much, Sarah, and good evening, everyone. 30 00:03:09,770 --> 00:03:16,100 It's such a pleasure to see in the chat so many people tuning in from, it looks like, all over the world. 31 00:03:16,100 --> 00:03:23,840 I've seen Nova Scotia and all parts of the UK. So as Sarah said, it is a bit of a downer that we have to meet remotely, 32 00:03:23,840 --> 00:03:30,140 but the upside is, more people can tune in. So I'm absolutely delighted that so many are doing so. 33 00:03:30,140 --> 00:03:35,780 This is the seventh annual University of Oxford Disability Lecture. 34 00:03:35,780 --> 00:03:40,040 And we're coming to you from a very soggy Oxford. 35 00:03:40,040 --> 00:03:48,140 Hard to believe it is May. It's the wettest May on record, and there's torrential rain outside my window as I speak. 36 00:03:48,140 --> 00:03:52,070 Nevertheless, we're absolutely delighted to be here. 37 00:03:52,070 --> 00:03:59,840 And so this lecture is organised by the Equality and Diversity Unit and the Staff Disability Advisory Group. 38 00:03:59,840 --> 00:04:06,170 These annual lectures bring together disabled and non-disabled colleagues and students to reflect on how 39 00:04:06,170 --> 00:04:12,320 we can advance equality for all our staff and students at the university. Tonight 40 00:04:12,320 --> 00:04:22,850 we're delighted that Dr Hamied Haroon from the University of Manchester will speak to us about the intersection of disability, science and academia. 41 00:04:22,850 --> 00:04:33,150 Dr Haroon is a Postdoctoral Research Associate based in the University of Manchester's Department of Neuroscience and Experimental Psychology. 42 00:04:33,150 --> 00:04:42,330 His research focuses on using novel and advanced biomedical magnetic resonance scanning, as well as analysis, to study how the human body, 43 00:04:42,330 --> 00:04:50,570 especially the brain, works in health; and to look at what changes with ageing, disease, and with treatment. 44 00:04:50,570 --> 00:04:59,510 As a disabled scientist, Dr Haroon became interested in the support available to disabled academics in his own institution and beyond. 45 00:04:59,510 --> 00:05:05,470 In 2013, he hit upon the idea of a nationwide super-network of higher education 46 00:05:05,470 --> 00:05:10,610 disabled staff networks, to share experiences and to share good practice, 47 00:05:10,610 --> 00:05:17,000 as well as to arrange activities and events. With help from colleagues and and elsewhere, 48 00:05:17,000 --> 00:05:28,700 the result in 2014 was the founding of the National Association of Disabled Staff Networks, NADSN, with Dr. Haroon as its chair. Doctor Haroon 49 00:05:28,700 --> 00:05:39,480 has driven the development of the NADSN as a collective platform for information, communication and the exploration of challenges and opportunities. 50 00:05:39,480 --> 00:05:44,810 With a mailing list, members' forum, a resource bank and a range of events, 51 00:05:44,810 --> 00:05:50,780 the NADSN supports disabled staff and their networks all across higher education. 52 00:05:50,780 --> 00:05:56,450 It has partnered with researchers, developed position papers, and contributed to government consultations, 53 00:05:56,450 --> 00:06:02,600 exploring issues around disability, and its intersection with other marginalised identities. 54 00:06:02,600 --> 00:06:07,880 Tonight, Dr. Haroon is going to talk to us about the ups and downs of his own life as a disabled 55 00:06:07,880 --> 00:06:14,800 scientist and academic, and about the lessons that the work of NADSN has to offer. 56 00:06:14,800 --> 00:06:20,740 Please join me in welcoming him. I look forward to learning to his contribution 57 00:06:20,740 --> 00:06:27,640 to our thinking, so that we can learn more about how we address the issues posed 58 00:06:27,640 --> 00:06:32,500 to our disabled staff and students, for the enrichment of the entire community. 59 00:06:32,500 --> 00:06:39,840 So thank you for joining us, Hamied, over to you. HAMIED: Thank you very much, Professor Richardson. 60 00:06:39,840 --> 00:06:48,510 Let me share my slides and... 61 00:06:48,510 --> 00:07:05,400 OK, maybe in the chat, somebody can let me know if you can see my slides, can you? 62 00:07:05,400 --> 00:07:14,060 JASLEEN: Yes, all good, Hamied. HAMIED: Great, awesome, OK, so I just need my... 63 00:07:14,060 --> 00:07:19,130 OK, here we go. So, Vice-Chancellor, friends and colleagues a very, 64 00:07:19,130 --> 00:07:29,540 very good evening to you all. I really can't express how glad I am to be presenting the annual Disability Lecture at the University of Oxford, 65 00:07:29,540 --> 00:07:36,920 of all places, the setting of 'His Dark Materials' and scholastic sanctuary. 66 00:07:36,920 --> 00:07:43,790 My deepest thanks to Dr Catherine Walter, Dr Jasleen Jolly, Sarah Stephenson-Hunter 67 00:07:43,790 --> 00:07:50,870 and Paul Moorhouse for their very kind and generous invitation to talk this evening. 68 00:07:50,870 --> 00:08:02,800 As Professor Richardson has already said, this lecture is based on my experiences of how disability, science and academia intersect. 69 00:08:02,800 --> 00:08:11,560 So there's the title. OK, so this slide just shows my name and my job title at the University of Manchester, 70 00:08:11,560 --> 00:08:17,050 where I work as a Research Associate in Biomedical Magnetic Resonance Imaging. 71 00:08:17,050 --> 00:08:25,010 Of course I told my whole department I was going to be here this evening, made everybody jealous. 'Be here', as if I'm actually in Oxford [laughs], 72 00:08:25,010 --> 00:08:31,820 it really does fell like that, but virtually of course. 73 00:08:31,820 --> 00:08:40,700 Let me start my story then. So my primary school years: this slide just shows a picture of the primary school I attended as a child. 74 00:08:40,700 --> 00:08:47,300 So my primary school years were spent at a special school in a leafy part of Manchester. 75 00:08:47,300 --> 00:08:53,830 The children there had a variety of disabilities, some with complex and severe impairments. 76 00:08:53,830 --> 00:09:00,830 And I learnt some of my life's most important lessons there about making the best of being disabled. 77 00:09:00,830 --> 00:09:11,210 We did lots of fun things like wheelchair dancing and taking part in fierce sports competitions against other special schools in and around Manchester, 78 00:09:11,210 --> 00:09:19,490 winning plenty of trophies and medals. But the academic stimulation I needed just wasn't there. 79 00:09:19,490 --> 00:09:30,950 So here is a picture of me in a wheelchair with my friends preparing for a wheelchair dancing competition, no less. 80 00:09:30,950 --> 00:09:37,160 I was very lucky. I was in the right place at the right time to be chosen as one of the first disabled pupils 81 00:09:37,160 --> 00:09:44,960 in Manchester to attend the only accessible mainstream high school at the time in the city. 82 00:09:44,960 --> 00:09:54,290 This was my introduction to the real world. I absorbed everything high school had to offer. And my favourite subject was science. 83 00:09:54,290 --> 00:10:02,870 And my passion for science was fuelled by TV programmes like 'Tomorrow's World' 84 00:10:02,870 --> 00:10:13,820 I don't know if anyone remembers 'Tomorrow's World', brilliant programme and 'Star Trek', another fantastic science fiction. 85 00:10:13,820 --> 00:10:24,140 And they did fuel my passion for science. They were portals into the possibilities of the future, some of which have already come to pass. The way 86 00:10:24,140 --> 00:10:33,860 Dr. McCoy in Star Trek would wave a probe over an ill person, diagnose their illness and then cure them straight away without a hitch: 87 00:10:33,860 --> 00:10:40,250 That made me think, yes, I want to become a doctor, just like him. 88 00:10:40,250 --> 00:10:50,870 Sadly, though, when it came time to seeking careers advice, I was told that there was no way I could pursue medicine with my disabilities. 89 00:10:50,870 --> 00:10:58,460 That was a setback. And I told my mum and she said, 'Well, never mind, you should become a lawyer instead'. 90 00:10:58,460 --> 00:11:10,160 But I had my heart set on science. That's why I wanted, see. So I achieved the best GCSE grades of my year at high school and went on to study maths, 91 00:11:10,160 --> 00:11:15,530 physics and biology at A level. During a physics class, 92 00:11:15,530 --> 00:11:24,470 I spotted a book on the teacher's shelf that was entitled 'Medical Physics', and I'm showing a picture of the cover of that book. 93 00:11:24,470 --> 00:11:28,820 This was like being struck by a divine bolt of lightning. 94 00:11:28,820 --> 00:11:34,740 I could enter the medical field, but as a physicist! 95 00:11:34,740 --> 00:11:40,740 So I'm showing the crest of the university I attended for physics and the picture of the place itself. 96 00:11:40,740 --> 00:11:52,260 So while reading physics at university, I was elected to the Students' Union as the Disability Access Secretary, and then ended up doing a bungee jump. 97 00:11:52,260 --> 00:11:59,460 And I'm showing a picture in a newspaper clip of the said bungee jump, from a 98 00:11:59,460 --> 00:12:05,580 crane on the side of the main road in Manchester, on the University campus. 99 00:12:05,580 --> 00:12:14,310 And this was in protest at the lack of access in some of the University's buildings, especially the Students' Union Building. 100 00:12:14,310 --> 00:12:17,640 So friends used to have because I was elected to the council, 101 00:12:17,640 --> 00:12:24,750 friends used to have to actually lift me in my wheelchair and carry me up flights of stairs, to the Council 102 00:12:24,750 --> 00:12:32,820 Chamber on the top. It was very dangerous, and the University were not willing to do very much about it at the time. 103 00:12:32,820 --> 00:12:39,320 So this this slide shows a snap of me upside down mid-bungee. 104 00:12:39,320 --> 00:12:47,190 And this picture featured in some major newspapers and magazines around the country, and Europe even. 105 00:12:47,190 --> 00:12:53,310 And this was the start of my brand of disability activism! 106 00:12:53,310 --> 00:13:01,360 So after doing my physics degree, I wanted to do an MSc in Medical Physics, but I had no way to pay for the fees. 107 00:13:01,360 --> 00:13:05,520 So at that time, the Snowdon Trust came to my rescue. 108 00:13:05,520 --> 00:13:14,040 The Snowdon Trust is a charity that's supporting students with physical disabilities into university. 109 00:13:14,040 --> 00:13:26,340 And again, the Snowdon Trust helped me to to enter my PhD in medical MR imaging at the same place, at the Manchester Medical School. 110 00:13:26,340 --> 00:13:36,840 So I've put a big green tick on a picture of the Medical School, because I actually got entry at it, not to do medicine per se, but to do medical physics. 111 00:13:36,840 --> 00:13:44,280 And it was like a dream come true. And I am now an Ambassador for the Snowdon Trust. 112 00:13:44,280 --> 00:13:47,610 I started my PhD at the turn of the century, 113 00:13:47,610 --> 00:13:57,450 which was a long time ago now, in developing novel analysis techniques of advanced magnetic resonance imaging and cancer. 114 00:13:57,450 --> 00:14:06,820 So this picture here I'm showing my supervisors, Professor Jackson and Professor Williams, who were my my supervisors 115 00:14:06,820 --> 00:14:11,810 for my PhD, and extremely supportive throughout the course of my PhD, 116 00:14:11,810 --> 00:14:16,990 when I had funding difficulties or difficulties just doing my studies, 117 00:14:16,990 --> 00:14:25,420 they both were extremely supportive in coming up with solutions for me, just great, great people to work with. 118 00:14:25,420 --> 00:14:34,660 And the whole centre was such a buzz at the time, around medical imaging and what we could do with these amazing techniques. 119 00:14:34,660 --> 00:14:41,790 So I'm showing a picture here on the left side of liver cancer. 120 00:14:41,790 --> 00:14:47,480 So this is an MRI image, but it's a map of how leaky liver cancer is. 121 00:14:47,480 --> 00:14:54,450 Let me tell you about this. I was involved in a European trial of a new anti-cancer drug. 122 00:14:54,450 --> 00:15:04,350 So when tumours grow beyond a certain size, they start generating their own blood vessels that deliver the nutrients they need to spread further. 123 00:15:04,350 --> 00:15:14,550 This is called angiogenesis. These new blood vessels are very immature, and they've got holes in their walls, so blood plasma can leak out. 124 00:15:14,550 --> 00:15:24,990 We can measure this leakiness with MRI and special analysis methods, which allows us to detect the extent and the aggressiveness of cancer. 125 00:15:24,990 --> 00:15:29,320 So what I'm showing with this picture here is a map. 126 00:15:29,320 --> 00:15:33,690 It's a quantitative measurement map of leakiness. 127 00:15:33,690 --> 00:15:41,940 And the scale is shown up here, going from dark colours, from black, all the way through to red, on just how leaky it is. 128 00:15:41,940 --> 00:15:49,910 So the more leaky, the more red it is green and then red. So the patient received the drug, 129 00:15:49,910 --> 00:16:02,730 the anti-cancer drug. And the liver metastases actually were suppressed and the change of colours from the reds and greens to blue in 130 00:16:02,730 --> 00:16:12,360 the second picture on the right here signifies a substantial reduction in leakiness and therefore suppression in that cancer. 131 00:16:12,360 --> 00:16:21,180 This was a tremendous result, and demonstrated how powerful advanced MRI methods could be, to just measure this effect. 132 00:16:21,180 --> 00:16:32,750 A traditional biopsy would not be able to provide this kind of information, and that is what is done usually, is just a biopsy, 133 00:16:32,750 --> 00:16:36,240 but you can't get this kind of spatial information from that. 134 00:16:36,240 --> 00:16:46,110 So while working on this project, I collaborated with some of the best cancer specialists in Manchester and even a trained qualified medical doctor, 135 00:16:46,110 --> 00:16:54,600 sorry, and even trained a qualified medical doctor in how to run the analysis software and understand the physics behind it. 136 00:16:54,600 --> 00:17:04,240 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 be! 137 00:17:04,240 --> 00:17:16,150 I presented my research at major international conferences in some exotic locations like Cannes in the south of France and Honolulu. 138 00:17:16,150 --> 00:17:20,950 Which was pretty awesome. What gorgeous places they are! But all for the sake of science, 139 00:17:20,950 --> 00:17:26,230 of course, and not the most accessible places though. 140 00:17:26,230 --> 00:17:34,210 Travel itself is not the most accessible means to cope with. 141 00:17:34,210 --> 00:17:45,010 But it was fun at that age anyway to be able to get out there. The way that my academic abilities were the only thing that mattered, 142 00:17:45,010 --> 00:17:52,900 regardless of my physical impairments, convinced me to stay in academia. 143 00:17:52,900 --> 00:18:02,350 So I submitted my thesis and became the doctor I always wanted to be, but not the kind that could save your life. 144 00:18:02,350 --> 00:18:03,770 Maybe a better kind. 145 00:18:03,770 --> 00:18:16,300 I was very fortunate to get my first Research Associate job shortly before I finished my PhD, in the same department, more than 14 years ago. 146 00:18:16,300 --> 00:18:22,060 I've worked on successive fixed-term research projects since then. And all the support, 147 00:18:22,060 --> 00:18:30,550 the support from my department and line managers over the years have meant I've been able to stay working in Manchester. 148 00:18:30,550 --> 00:18:35,980 Many people move from place to place in order to progress their academic careers. 149 00:18:35,980 --> 00:18:47,870 But that wasn't practical for me. So my current research project is on new ways of diagnosing dementia 150 00:18:47,870 --> 00:18:53,360 earlier. The brain damages over here are showing, 151 00:18:53,360 --> 00:19:02,210 on the top row from a healthy older volunteer; and then somebody of the same age at the bottom here, 152 00:19:02,210 --> 00:19:08,480 but with advanced Alzheimer's disease. And what these MRI images show, 153 00:19:08,480 --> 00:19:17,210 these structural images show, is that in the late stage of dementia, there's so much of the brain that's been lost. 154 00:19:17,210 --> 00:19:26,150 The black cavities that you see here are the ventricles of the brain filled with fluid, CSF, cerebro-spinal fluid. 155 00:19:26,150 --> 00:19:30,380 And you can kind of see that the brain is is withering away. 156 00:19:30,380 --> 00:19:36,140 It's like a tree. In the summertime, in good health, 157 00:19:36,140 --> 00:19:40,430 a tree is like full of leaves, lush green leaves. 158 00:19:40,430 --> 00:19:50,060 But by the stage of advanced Alzheimer's disease, it's like those leaves have all fallen, and you're left with just branches. 159 00:19:50,060 --> 00:19:55,160 It's too late to do anything for somebody at this late stage of Alzheimer's disease. 160 00:19:55,160 --> 00:20:07,310 So we need to catch it much earlier on if we want a chance of curing it. So we're using MRI, this beautiful, 161 00:20:07,310 --> 00:20:14,060 shiny new scanner of ours at Manchester, and we are part of the Dementias Platform UK, 162 00:20:14,060 --> 00:20:23,450 which is funded by the Medical Research Council to do advanced MR imaging, PET, which is positron emission tomography, 163 00:20:23,450 --> 00:20:32,750 as well as magnetic resonance imaging, in bigger studies, to try and detect those early stages of dementia. 164 00:20:32,750 --> 00:20:36,770 So what I work on is what's called micro-structural imaging, 165 00:20:36,770 --> 00:20:47,870 and we're developing cutting-edge MRI to detect the very early microscopic changes in the brain that lead on to this devastating disease. 166 00:20:47,870 --> 00:20:55,430 The images on this slide are characterising the micro-structure of the brain by probing the diffusion of water molecules, 167 00:20:55,430 --> 00:21:02,450 just pure water, in a human on the left and in a rat on the right. 168 00:21:02,450 --> 00:21:09,980 The benefit of using rats is that, I mean, some people like the rats, but not everybody is too devoted to rats. 169 00:21:09,980 --> 00:21:20,240 So we can take their brains out, cut them out, slice them up and compare against the kind of images we get, to validate those measurements: make sure 170 00:21:20,240 --> 00:21:27,910 what we're looking at on the images are real changes in the brain. 171 00:21:27,910 --> 00:21:33,430 So that's the kind of work I'm up to. And more recently, 172 00:21:33,430 --> 00:21:44,140 I've been working with a start-up company in Manchester who are trying to translate some of that research work to actual patient benefit, 173 00:21:44,140 --> 00:21:48,550 which is a real, real struggle in itself, to do that. 174 00:21:48,550 --> 00:21:55,780 But it's brilliant to then combine the imaging work with artificial intelligence as well, 175 00:21:55,780 --> 00:22:04,580 to take it into the health care setting, and actually benefit patients by it. 176 00:22:04,580 --> 00:22:08,690 So do I enjoy my job? Heck, yes. I love what I do. 177 00:22:08,690 --> 00:22:14,600 I collaborate with all sorts of clever and inspirational people across the globe. 178 00:22:14,600 --> 00:22:20,360 I get to teach and engage with bright, young and enthusiastic people. 179 00:22:20,360 --> 00:22:23,600 I love being creative, facing new challenges every day. 180 00:22:23,600 --> 00:22:30,860 No day is the same. And presenting at international scientific conferences is also a buzz. 181 00:22:30,860 --> 00:22:40,010 But support is crucial, and I bring up the sign for Access to Work here. The integrated support I have 182 00:22:40,010 --> 00:22:47,300 is so important to me. It lets me fulfil my potential with independence, and confidence, and dignity. 183 00:22:47,300 --> 00:22:56,660 So I need support. Without that, I could not have studied or done my job as a student. I had the Disabled Student's Allowance, 184 00:22:56,660 --> 00:23:00,770 which has sadly been restricted for future students 185 00:23:00,770 --> 00:23:09,080 in many ways. And additional support from the Snowdon Trust. On becoming a member of staff, though, I suddenly lost that support. 186 00:23:09,080 --> 00:23:13,760 Thankfully, and rather by mistake, 187 00:23:13,760 --> 00:23:24,500 my HR contact pointed me to this government scheme, to Access to Work, which he had heard of, supporting disabled people in paid work. 188 00:23:24,500 --> 00:23:33,230 But the scheme is still very poorly promoted. It's like the Government don't want disabled people to know about it. Access to Work 189 00:23:33,230 --> 00:23:42,380 allowed me to employ my personal assistant to help me with everyday physical tasks that I can't manage myself and to help me to go to conferences, 190 00:23:42,380 --> 00:23:46,390 a vital part of being a researcher. 191 00:23:46,390 --> 00:23:54,670 Without this, I would literally have to stay at home. Just literally. I couldn't work, I couldn't get to work every day. 192 00:23:54,670 --> 00:23:58,840 But the skills and the perspective that we bring are so important. 193 00:23:58,840 --> 00:24:07,660 So I think it's for every 1 the Government spends for Access to Work, the Exchequer makes back at least 1.20, 194 00:24:07,660 --> 00:24:19,120 if not more. So there's a huge benefit in supporting disabled people in academia or any kind of work. 195 00:24:19,120 --> 00:24:33,160 And the kind of enthusiasm and passion I have for my work is shared by disabled people in academia, in all roles, I believe. 196 00:24:33,160 --> 00:24:41,950 Let me tell you very quickly about the condition I have. So I've never actually described this in a public lecture before, 197 00:24:41,950 --> 00:24:48,280 but I have something called Charcot-Marie-Tooth disease. It's got nothing to do with dental care. 198 00:24:48,280 --> 00:24:52,300 It's also known as hereditary motor and sensory neuropathy. 199 00:24:52,300 --> 00:24:58,210 So it's a neurological condition. I've always had it, a genetic condition. 200 00:24:58,210 --> 00:25:04,870 It affects the peripheral nervous system. And so what happens is the peripheral nervous system, 201 00:25:04,870 --> 00:25:10,720 the nerves that carry the signal and away from the brain and the spinal cord 202 00:25:10,720 --> 00:25:17,230 those nerves have what we call 'myelin', a kind of wrapping around the nerve, 203 00:25:17,230 --> 00:25:24,190 but leaving gaps between so the signal can progress rapidly from the origin 204 00:25:24,190 --> 00:25:30,130 of that signal all the way down the the axons by jumping between those gaps, 205 00:25:30,130 --> 00:25:39,220 which is extraordinary. So they just go super speed. In the condition I have, the myelin is being lost, a demyelinating condition. 206 00:25:39,220 --> 00:25:40,960 And so with the loss of that myelin then, 207 00:25:40,960 --> 00:25:51,580 it's almost like a frayed wire, a bare frayed wire, and the signal just doesn't travel down the axons fast enough. 208 00:25:51,580 --> 00:25:56,050 And in fact, the signal gets lost. And this is a degenerating condition. 209 00:25:56,050 --> 00:26:00,770 So I could do much more when I was younger than I can do now. 210 00:26:00,770 --> 00:26:10,010 And the symptoms are around muscle pain and hand tremors, although I don't get that. Cold hands and feet. Very cold, 211 00:26:10,010 --> 00:26:20,180 it's like the heating's on and I'm still cold. Drop foot, because there's no control in the position of foot. Pain in the nerves. Chronic fatigue. 212 00:26:20,180 --> 00:26:23,750 I mean, I can fall asleep at any moment. 213 00:26:23,750 --> 00:26:32,870 Just tell me to go to sleep and I will. Numbness around the body, curled fingers, so I don't know if you can see my hands, 214 00:26:32,870 --> 00:26:43,640 but they're just floppy hands, and curled as well. And atrophy in the muscles of the legs and arms, curled-up toes, 215 00:26:43,640 --> 00:26:53,660 high arches, breathing difficulties, which is something I'm starting to experience as I am getting on in years. So the science and 216 00:26:53,660 --> 00:27:00,770 engineering behind understanding the condition also have provided some of the things I depend on: 217 00:27:00,770 --> 00:27:11,240 so callipers, being a feat of engineering. For somebody like me, who can't stand on their own feet, 218 00:27:11,240 --> 00:27:16,610 my support worker puts my callipers on, and suddenly I can stand up. 219 00:27:16,610 --> 00:27:20,900 They're just an incredible thing. And it was in my childhood 220 00:27:20,900 --> 00:27:31,670 I was introduced to these, and it was by a professor of bio-engineering who looked just like the Kentucky Fried Chicken man. And of course, 221 00:27:31,670 --> 00:27:38,000 my powered wheelchair: so I can't I can't push a manual wheelchair myself, 222 00:27:38,000 --> 00:27:48,030 so having a powered wheelchair just gives me that independence, control, to get around wherever I want to, like everyone else can. 223 00:27:48,030 --> 00:27:54,420 And there's so many other pieces of equipment and engineering that give independence, 224 00:27:54,420 --> 00:28:02,910 control and dignity as well in life. So these are the intersections, you know, with my disability. 225 00:28:02,910 --> 00:28:07,860 Now, I want to do a quick exercise with everybody. 226 00:28:07,860 --> 00:28:18,840 I'd like you in the chat, please, to use a word or two to say how some of these words make you feel. OK. 227 00:28:18,840 --> 00:28:23,740 And these words are 'abnormal, invalid, 228 00:28:23,740 --> 00:28:29,760 handicapped, spastic, dumb, 229 00:28:29,760 --> 00:28:36,240 vulnerable'. So just thinking about those words collectively, how do they make you feel? 230 00:28:36,240 --> 00:28:51,570 So just a word or so. And what we're going to do is, Jasleen is going to kindly put those those comments together into a word diagram, what do they call it, a word cloud. 231 00:28:51,570 --> 00:29:02,970 And we will come back to that later on. So those words again: 'abnormal, invalid, handicapped, spastic, dumb and vulnerable'. 232 00:29:02,970 --> 00:29:10,390 So in the chat, just say how these words make you feel. 233 00:29:10,390 --> 00:29:16,270 OK. So did my disability activism stop at the bungee jump? 234 00:29:16,270 --> 00:29:28,090 No way. I had to start up and lead the university's Disabled Staff Network. And at the time I had to meet the Vice Chancellor of the university, 235 00:29:28,090 --> 00:29:32,950 who was Professor Alan Gilbert. Sadly, he's passed away now, but he was a great guy. 236 00:29:32,950 --> 00:29:38,680 And I met with him having done a SWOT analysis. 237 00:29:38,680 --> 00:29:44,800 So strengths, weaknesses, opportunities and threats, on the experiences of disabled staff. 238 00:29:44,800 --> 00:29:52,480 And we were instrumental in making our university one of the first to provide dedicated support for disabled staff, 239 00:29:52,480 --> 00:30:04,180 which was the thing where we were... the biggest weakness and the biggest threat was not having that support available for disabled staff. 240 00:30:04,180 --> 00:30:13,720 And so we had that arranged alongside the support already there for students. 241 00:30:13,720 --> 00:30:19,280 This is shown now on the Disability Advisory and Support Service. 242 00:30:19,280 --> 00:30:26,690 at our university: there's support available for disabled staff, and staff working with disabled staff. 243 00:30:26,690 --> 00:30:29,210 And there was, 244 00:30:29,210 --> 00:30:42,820 it was a great moment to have this service provided alongside the students'. It actually helped a whole lot more disabled staff come forward and ... disclose? 245 00:30:42,820 --> 00:30:51,140 I don't like the words 'disclose', 'declare', but they actually shared information about their disabilities, because 246 00:30:51,140 --> 00:30:57,500 suddenly there was support available that they had needed for so long. 247 00:30:57,500 --> 00:31:09,020 And from a few disabled staff, suddenly the numbers shot up to, I think, a thousand or so now on the services register. 248 00:31:09,020 --> 00:31:14,420 And so it was a brilliant change for the university. 249 00:31:14,420 --> 00:31:23,420 So in June 2014, as the Vice Chancellor kindly talked about at the beginning, in June 2014 250 00:31:23,420 --> 00:31:32,570 we held the first national conference for and about disabled staff in higher education institutions from across the country. 251 00:31:32,570 --> 00:31:43,250 And it was called 'What Are We Hiding?'. This slide shows our University's President, President and 252 00:31:43,250 --> 00:31:52,580 Vice Chancellor, presenting the inaugural Making a Difference award to Melanie and I for organising this groundbreaking event. 253 00:31:52,580 --> 00:31:58,490 Sorry, I should have said: the event itself had a double theme of hidden disability, 254 00:31:58,490 --> 00:32:04,940 hidden impairment, and the hidden contribution of disabled employees to the nation's economy. 255 00:32:04,940 --> 00:32:15,770 So in terms of hidden disabilities, I mean, mental health conditions, autism, HIV, all sorts of things we talked about, 256 00:32:15,770 --> 00:32:23,990 we had sessions around all of them. And, yeah, we were awarded well for doing that conference. 257 00:32:23,990 --> 00:32:34,280 But I used that conference, the occasion of that conference, to launch the National Association of Disabled Staff Networks, 258 00:32:34,280 --> 00:32:40,070 because we saw from that conference, and 259 00:32:40,070 --> 00:32:47,240 from contacts before and with other universities that disabled staff 260 00:32:47,240 --> 00:32:55,370 in other institutions were having very similar experiences and were trying to set up their own disabled staff networks. 261 00:32:55,370 --> 00:32:59,960 So we thought, why keep everybody in silos? 262 00:32:59,960 --> 00:33:08,690 It's always better to bring together people, to bring together colleagues going through similar experiences and to learn from each other. 263 00:33:08,690 --> 00:33:18,590 So this is a super-network, connecting and representing disabled staff networks in the tertiary education sector, 264 00:33:18,590 --> 00:33:29,570 for universities and colleges across the UK and beyond, open to any individual or organisation interested in promoting the equality of disabled staff. 265 00:33:29,570 --> 00:33:34,260 And so I've already said about that who we are: 266 00:33:34,260 --> 00:33:40,850 We are focused on universities and colleges, we are open to any individual or organisation interested in 267 00:33:40,850 --> 00:33:46,350 promoting the equality of disabled staff. We act as a collective platform to share experiences and 268 00:33:46,350 --> 00:33:56,030 good practice and examine challenges and opportunities. We are an unincorporated association, we're non-governmental, got nothing to do with Government. 269 00:33:56,030 --> 00:34:01,790 We're independent and self-determining, made up of impassioned people. 270 00:34:01,790 --> 00:34:15,560 So we are actually looking at changing this setup into a more formal structure, possibly a charity of some kind so we can start raising money. 271 00:34:15,560 --> 00:34:17,420 So, a few facts. 272 00:34:17,420 --> 00:34:29,210 We have more than 200 members from over 100 different organisations across the UK and abroad, including 59 universities probably more by now. 273 00:34:29,210 --> 00:34:38,570 And we include colleagues from the BBC, ITV, the Scottish Parliament, quite a few NHS trusts and the Institute of Physics. 274 00:34:38,570 --> 00:34:43,910 And we have a steering committee that leads us. So I'm very lucky to be the Chair 275 00:34:43,910 --> 00:34:52,010 right now. We have two Vice Chairs, Jacquie Nicholson up in Scotland and Stuart Moore at NHS England, 276 00:34:52,010 --> 00:34:57,800 and our secretary is Kelly Pickard-Smith, my colleague at Manchester University. 277 00:34:57,800 --> 00:35:04,880 Jacquie also fills the role of Fundraiser and Treasurer, although [laughs] we don't have any money just yet. 278 00:35:04,880 --> 00:35:08,600 The Engagement and Communications Lead is 279 00:35:08,600 --> 00:35:14,750 Peter Collins of Birmingham. And then we have a network of regional leads. 280 00:35:14,750 --> 00:35:22,310 You'll note that there are quite a few vacancies in some of the regions, and we are working on trying to fill those. 281 00:35:22,310 --> 00:35:28,970 So if you know anyone interested, please do let me know. And NADSN's Patron: 282 00:35:28,970 --> 00:35:39,220 We're very lucky to have Professor Anna Lawson, who is Co-Director of the Centre for Disability Studies at Leeds University. 283 00:35:39,220 --> 00:35:45,300 So she is our first patron of the National Association. 284 00:35:45,300 --> 00:35:52,700 It's great to have her on board. She is a lawyer and very learned in equality law, 285 00:35:52,700 --> 00:36:05,650 so we learn a lot from her and get support. OK, some of our aims are around promoting disability equality and campaigning for disabled staff, 286 00:36:05,650 --> 00:36:12,620 and the one I want to highlight is that we challenge stereotypes by endorsing 287 00:36:12,620 --> 00:36:23,490 the Social Model of disability and promoting a positive image of disabled people, eliminating the deficit of the Medical Model. 288 00:36:23,490 --> 00:36:29,130 So let me explain what the Social Model is for those who don't know. The Social Model of disability 289 00:36:29,130 --> 00:36:39,690 identifies systemic barriers, negative attitudes and exclusion by society purposefully or inadvertently 290 00:36:39,690 --> 00:36:45,660 that mean society is the main contributory factor in disabling people. 291 00:36:45,660 --> 00:36:54,360 So it's not us who are disabled, but it's those factors, those systemic barriers that make us disabled. 292 00:36:54,360 --> 00:36:58,800 And those barriers include prejudice, ignorance and stigma; 293 00:36:58,800 --> 00:37:06,900 negative attitudes; inaccessible places, transport, conversations and information: 294 00:37:06,900 --> 00:37:10,500 All are barriers and make us disabled. 295 00:37:10,500 --> 00:37:21,120 And there's a brilliant video on Scope explaining what the Social Model means to disabled people ourselves, which is a brilliant resource. 296 00:37:21,120 --> 00:37:34,460 There are variants to the Social Model now, kind of progressing the arguments as well around a model of disability. 297 00:37:34,460 --> 00:37:41,100 So there's some good scholarly work out there looking at that too. And of course, 298 00:37:41,100 --> 00:37:48,090 the UN's Convention on the Rights of Persons with Disabilities which our country, the UK, does not do well on 299 00:37:48,090 --> 00:37:54,990 the Preamble of that Convention says, 'Disability is an evolving concept 300 00:37:54,990 --> 00:38:00,720 and that disability results from the interaction between persons with impairments 301 00:38:00,720 --> 00:38:08,160 and attitudinal and environmental barriers that hinders 302 00:38:08,160 --> 00:38:14,040 our full and effective participation in society on an equal basis with others'. 303 00:38:14,040 --> 00:38:18,600 And one slogan we love is 'Nothing about us without us'. 304 00:38:18,600 --> 00:38:25,320 Disabled people have to be front and centre in anything to do with us. 305 00:38:25,320 --> 00:38:34,740 And lived experience is just crucial in getting anything to be better, to improve stuff. 306 00:38:34,740 --> 00:38:39,630 So since we're focused on universities and colleges, 307 00:38:39,630 --> 00:38:49,200 looking at the experiences of disabled academics is a central part of what we do in NADSN. 308 00:38:49,200 --> 00:39:01,530 This is a word cloud from Heriot-Watt University and some work done by a colleague there, around some stereotypes of what makes an ideal academic. 309 00:39:01,530 --> 00:39:11,740 Sorry, can I just check - am I good for time? Can somebody tell me? JASLEEN: Five minutes left. HAMIED: I've got five minutes? 310 00:39:11,740 --> 00:39:15,940 Is that all? JASLEEN: Six minutes. 311 00:39:15,940 --> 00:39:22,270 HAMIED: Six minutes! Oh, my God! OK, let's see. 312 00:39:22,270 --> 00:39:26,220 CATHERINE: No, 15 minutes, Hamied. Don't panic. HAMIED: OK, 15 minutes. 313 00:39:26,220 --> 00:39:38,530 Right. So some of the stereotypes around the ideal academic being that, you know, academics work twenty-four hours a day. 314 00:39:38,530 --> 00:39:46,300 They just work independently, they don't need the toilet. They can easily swap topics. They're mobile. 315 00:39:46,300 --> 00:39:51,070 They have a body. They just do excellent research and teaching all the time. 316 00:39:51,070 --> 00:39:55,510 They attract the highest research funding. They are white. 317 00:39:55,510 --> 00:40:00,760 They're a man. They like to chat. They can think all the time. 318 00:40:00,760 --> 00:40:07,210 So many stereotypes of what an ideal academic is. 319 00:40:07,210 --> 00:40:16,700 This is a brilliant book I'm showing here the cover of, called Super Hero Scientists by David Allen and Alex Sinclair. 320 00:40:16,700 --> 00:40:25,510 And this book was recently published for primary school children, actually, to promote diversity in science, 321 00:40:25,510 --> 00:40:31,570 to let children know that it doesn't matter what your background is or who you are, science is for you. 322 00:40:31,570 --> 00:40:38,340 And this book includes information about all sorts of scientists from all sorts of backgrounds. 323 00:40:38,340 --> 00:40:48,410 And somehow I got into this book as well. So my name comes just second after Rosalind Franklin, which is pretty damn good. 324 00:40:48,410 --> 00:41:00,700 And this picture here is showing me in my wheelchair with bat wings! Flying through the air and of course, the Starship Enterprise drawn just beneath me. 325 00:41:00,700 --> 00:41:07,990 So, yeah, it kind of hits back at those stereotypes, that it's not necessary 326 00:41:07,990 --> 00:41:18,490 for being a good academic. There was a conference held back in 2018 around ableism in academia, 327 00:41:18,490 --> 00:41:23,470 which brought together disabled academics, pan-impairment. 328 00:41:23,470 --> 00:41:32,500 So many impairments were represented, along with neurodiversity and chronic illnesses. 329 00:41:32,500 --> 00:41:42,910 And these books have been published by Nicole Brown and colleagues, coming out of that conference, with recommendations around how ableism 330 00:41:42,910 --> 00:41:52,330 in academia can be addressed what actions our sector needs to take in terms of institutions, and societies, and 331 00:41:52,330 --> 00:42:03,940 funding bodies to fight back at ableism, and that it has no place in academia. 332 00:42:03,940 --> 00:42:07,330 It has no place anywhere. 333 00:42:07,330 --> 00:42:17,320 So these are really great books that have just come out recently, and hopefully will provide a lot of impetus for change. 334 00:42:17,320 --> 00:42:28,480 So disabled academics and researchers in 2018: 19% of the UK working age population identify as disabled, 335 00:42:28,480 --> 00:42:39,880 but only 4% of academic staff are disabled. Representation of disabled researchers in STEMM drops by 40 percent between undergraduate and 336 00:42:39,880 --> 00:42:51,040 postgraduate level. 10% increase in employment rate of disabled individuals would lead to an extra 12 billion pounds to the Exchequer by 2030. 337 00:42:51,040 --> 00:42:58,450 And the UK needs an extra 1.2 million engineers by 2025. 338 00:42:58,450 --> 00:43:04,660 Increasing employment of disabled people in STEMM, then, would kill two birds with one stone. 339 00:43:04,660 --> 00:43:09,310 And this information is from my very good friend Dr Jessica Boland, 340 00:43:09,310 --> 00:43:15,940 and she also says only 25% of disabled researchers apply for research funding. 341 00:43:15,940 --> 00:43:20,530 Why? Disabled researchers have a 4% lower success rate 342 00:43:20,530 --> 00:43:31,550 than non-disabled researchers for winning grants as PI, and the award amount is also 50% lower for disabled researchers 343 00:43:31,550 --> 00:43:43,280 than non-disabled researchers in 2018-19. Incredibly surprising if you assume disabled researchers have increased access costs. 344 00:43:43,280 --> 00:43:52,130 The Royal Society in marking the International Day of Disabled People over the last couple of years, 345 00:43:52,130 --> 00:44:01,940 that being on the 3rd of December, over the last couple of years has been showcasing and celebrating disabled scientists, which is so nice to see. 346 00:44:01,940 --> 00:44:09,830 So I made it the first year, and Jessica's in the next year after that. And from this work and these biographies that 347 00:44:09,830 --> 00:44:17,270 have been written, somehow I've managed to get onto the Diversity Committee of the Royal Society, 348 00:44:17,270 --> 00:44:31,730 which is a huge privilege to be part of, working with incredible colleagues across the board, with such rich experiences in the sector, in science here. 349 00:44:31,730 --> 00:44:40,910 And there's a subgroup of this Diversity Committee on supporting scientists with disabilities. 350 00:44:40,910 --> 00:44:51,750 And right now, we're supporting a project on developing BSL sign language for scientific terminology, 351 00:44:51,750 --> 00:45:01,430 and that's going to be focused on environmental sciences, so it's very exciting to see that kind of work come through. 352 00:45:01,430 --> 00:45:05,060 And on the back of that, because of my membership on the Committee, 353 00:45:05,060 --> 00:45:15,950 in NADSN I set up a club, I called it a club, it's just a group of people who are interested in STEMM, STEMM being science, 354 00:45:15,950 --> 00:45:25,670 technology, engineering, medicine, and maths. And on the basis of some publications and work already out there 355 00:45:25,670 --> 00:45:33,470 so Jessica Boland and TIGERS in STEM had a report on accessibility in 356 00:45:33,470 --> 00:45:39,050 STEMM, and the barriers that disabled scientists face in terms of research funding. 357 00:45:39,050 --> 00:45:47,420 We've got a very short communication in Nature around disabled scientists calling for more support. 358 00:45:47,420 --> 00:45:56,390 And there's a project at Heriot-Watt University going on right now: Disability Inclusive Science Careers, 359 00:45:56,390 --> 00:46:05,870 looking at the experiences of disabled scientists and developing virtual reality for managers and PIs 360 00:46:05,870 --> 00:46:14,030 of disabled staff so they can actually experience what we go through [laughs], which is pretty awesome. 361 00:46:14,030 --> 00:46:18,620 So we want to develop from that STEMM club, 362 00:46:18,620 --> 00:46:28,520 we want to develop recommendations and reports that we want to take to Wellcome Trust, to UKRI, in 363 00:46:28,520 --> 00:46:38,180 order for their systems to change and for the barriers to be brought down by those funding bodies. 364 00:46:38,180 --> 00:46:45,560 The Wellcome Trust is already kind of leading reimagining research and research culture work, 365 00:46:45,560 --> 00:46:51,650 which is great, although I haven't yet seen very much on disability in that. 366 00:46:51,650 --> 00:46:56,150 So we need to work with them to push that forward. 367 00:46:56,150 --> 00:47:06,980 UKRI: I met with the new CEO, Professor Dame Ottoline Leyser, and she's very enthusiastic, 368 00:47:06,980 --> 00:47:12,620 very keen to move things forward from UKRI's point of view, which is great. 369 00:47:12,620 --> 00:47:17,870 And we work with our sister organisations, Chronically Academic, TIGERS in STEMM and EDIS, 370 00:47:17,870 --> 00:47:22,840 which is Equality, Diversity and Inclusion in Science and Health. 371 00:47:22,840 --> 00:47:27,540 OK, you know what? I might just 372 00:47:27,540 --> 00:47:31,370 skip the slide. 373 00:47:31,370 --> 00:47:44,210 Every year NADSN tries to hold a national conference, and the last one we had in person pre-pandemic was a conference around intersectionality. 374 00:47:44,210 --> 00:47:50,330 So it was intersectionality of disability and sexuality and gender identity. 375 00:47:50,330 --> 00:47:59,270 And it was the first time in the sector, I think, that there had been an intersectional conference of this kind. 376 00:47:59,270 --> 00:48:09,440 And it was brilliant for NADSN's work with the LGBT Network of Networks in Higher Education to hold this event. 377 00:48:09,440 --> 00:48:15,050 There were some brilliant sessions, workshops and posters around intersectionality, 378 00:48:15,050 --> 00:48:23,660 unearthing the hidden voices in their higher education; looking not just at the intersection of disability and sexuality, 379 00:48:23,660 --> 00:48:32,000 but looking at faith and race as well, which was just incredible, sharing experiences openly and honestly. 380 00:48:32,000 --> 00:48:37,160 And we hope to to reignite our conferences as soon as we can, 381 00:48:37,160 --> 00:48:46,250 because they have been a brilliant source of bringing our communities together, bringing disabled staff together. 382 00:48:46,250 --> 00:48:55,160 During the pandemic, we published a paper on recommendations post-lockdown. 383 00:48:55,160 --> 00:49:05,210 We published that last year in May, about this time last year, when we thought that lockdown would be over pretty soon. 384 00:49:05,210 --> 00:49:10,610 But, of course, we went back into lockdown. Hopefully that won't happen again. 385 00:49:10,610 --> 00:49:14,600 But the paper gave strategies, for universities 386 00:49:14,600 --> 00:49:26,660 particularly, recommendations that were like 12 recommendations for universities to support disabled staff and students on returning to campus, 387 00:49:26,660 --> 00:49:37,940 and really not losing all the great practice that's been developed during the pandemic in terms of people working from home; 388 00:49:37,940 --> 00:49:43,400 flexibility in the way we work; and support of other kinds as well: 389 00:49:43,400 --> 00:49:51,890 not to lose all of that as soon as lockdown is over. So there's a paper there from NADSN on that. And the Black Lives Matter as well: 390 00:49:51,890 --> 00:49:58,340 we have a great statement, looking at intersectionality of disability and race, too, 391 00:49:58,340 --> 00:50:14,610 and how racism and ableism have similar issues going on that we need to tackle, systemic issues that we need to look at together. 392 00:50:14,610 --> 00:50:22,220 Sorry, I'm running out of steam a little bit. But I just want to tell you about this Disability and Leadership Workshop that's coming up. 393 00:50:22,220 --> 00:50:28,920 An event on new challenges and new possibilities on disability and leadership. 394 00:50:28,920 --> 00:50:34,100 So this is an event NADSN is supporting alongside Purple Space. 395 00:50:34,100 --> 00:50:39,500 And the University of Birmingham are playing host, the Birmingham Business School. 396 00:50:39,500 --> 00:50:44,780 And this is going to take place on Wednesday, 2nd of June from 1:00 to 3:30. 397 00:50:44,780 --> 00:50:50,810 And the guest speakers are just some incredible disabled leaders themselves. 398 00:50:50,810 --> 00:51:00,590 So Kate Nash will be the creator and CEO of Purple Space they're all my great friends Jane Cordell, 399 00:51:00,590 --> 00:51:08,750 Director of Results CIC, and Professor Nicola Martin from London Southbank University, the Director of NADP. 400 00:51:08,750 --> 00:51:13,970 They will be the special guest speakers talking on disability and leadership. 401 00:51:13,970 --> 00:51:23,330 And I love this little infographic from Professor Martin about what leadership means: supporting people, 402 00:51:23,330 --> 00:51:29,150 motivation, having goals, reaching success, contributing and teamwork.] 403 00:51:29,150 --> 00:51:34,010 I like these two words best of all in terms of leadership. 404 00:51:34,010 --> 00:51:37,670 So there's a link down there to the Eventbrite. That's going to be in a couple of weeks. 405 00:51:37,670 --> 00:51:48,550 I'm really looking forward to that. So a brilliant initiative that's just kind of coming, 406 00:51:48,550 --> 00:52:00,640 well, it's coming to a peak, I think, is this one around The Valuable 500. You may or may not have heard of this. 407 00:52:00,640 --> 00:52:08,420 It's being, talking about leaders, by this marvellous disabled woman, who 408 00:52:08,420 --> 00:52:19,600 has incredibly brought together 500 of the biggest businesses, 409 00:52:19,600 --> 00:52:31,120 corporations, around the world, on the global stage, to commit to disability being on their board agenda. 410 00:52:31,120 --> 00:52:41,980 So let me just give you some of the things, the global movement, 411 00:52:41,980 --> 00:52:47,710 The Valuable 500, is a global movement putting disability on the business leadership agenda. 412 00:52:47,710 --> 00:52:53,710 So The Valuable 500 are looking for 500 national and multinational private sector 413 00:52:53,710 --> 00:52:58,400 corporations to be the tipping point for change and to unlock the business, 414 00:52:58,400 --> 00:53:05,200 social and economic value of people, of disabled people across the world, because, as they say, 415 00:53:05,200 --> 00:53:15,940 the potential of 1.3 billion disabled people should not be ignored. Where there's disability inclusion, 416 00:53:15,940 --> 00:53:26,170 these companies are going to start scaling up on leading the charge, and they want companies to join The Valuable 500, and Caroline 417 00:53:26,170 --> 00:53:30,940 Casey has been on this mission for the last few years. 418 00:53:30,940 --> 00:53:37,000 And just in the last month or so, she's actually got 500 companies to sign up, 419 00:53:37,000 --> 00:53:45,110 so that is extraordinary. Just so you know, we're going back to words now. 420 00:53:45,110 --> 00:54:02,810 JASLEEN: I have the words ready. HAMIED: Great, let's do this. So let me stop sharing my screen. 421 00:54:02,810 --> 00:54:09,740 Wow. It's. So. 422 00:54:09,740 --> 00:54:20,170 I like that one, somebody said they were bored. The biggest words: 'sad', 'angry', yeah, 'othered', 'helpless', 'depressed', 'frustrated'. 423 00:54:20,170 --> 00:54:29,090 Exactly, yeah, I couldn't have said it better myself. Those are some of the reactions, exactly, you feel from those words. 424 00:54:29,090 --> 00:54:34,370 And those words that I brought up, reactions to which are given here, 425 00:54:34,370 --> 00:54:42,410 those words are words used by scientists, much of the time, to describe disabled people 426 00:54:42,410 --> 00:54:56,450 in publications and studies and, you know, being abnormal or being lost a couple of the words now but, you know, 427 00:54:56,450 --> 00:55:03,890 making us feel like we are othered. We're just outside of the game, 428 00:55:03,890 --> 00:55:10,550 the whole time. Thank you very much, Jasleen. I'm going to go back to this. 429 00:55:10,550 --> 00:55:19,980 OK, so very quickly, I just want to end off with just a couple of more slides. 430 00:55:19,980 --> 00:55:27,000 So I hope we still have the Vice Chancellor's attention. There's been a petition that's going 431 00:55:27,000 --> 00:55:37,900 around about a very high ranking and very influential academic at the University of Oxford. 432 00:55:37,900 --> 00:55:51,270 So, Professor Richard Dawkins has made some very worrying remarks recently against women who have Down Syndrome babies. 433 00:55:51,270 --> 00:55:57,090 And this isn't the first time that Professor Dawkins has said such things. 434 00:55:57,090 --> 00:56:07,620 Apparently, so I've heard, he's said very derogatory remarks against disabled people more generally before as well. 435 00:56:07,620 --> 00:56:17,280 So I have signed this petition, which asks Oxford University to reconsider Professor Dawkins' Emeritus status, 436 00:56:17,280 --> 00:56:20,460 which he currently holds at the University. 437 00:56:20,460 --> 00:56:30,780 And I would implore the Vice Chancellor to look at this petition, to look at the evidence and to make a very considered judgement 438 00:56:30,780 --> 00:56:37,950 in Professor Dawkins' case. Having read the petition and what 439 00:56:37,950 --> 00:56:48,930 Professor Dawkins has said, I would be very strongly suggesting to Oxford that revoking his Emeritus status would be the 440 00:56:48,930 --> 00:56:55,590 only right thing to do, and showing disabled people that Oxford University values our lives, 441 00:56:55,590 --> 00:57:01,680 really that's what it comes down to. Some of 442 00:57:01,680 --> 00:57:06,300 Professor Dawkins' remarks come very close, 443 00:57:06,300 --> 00:57:14,200 well, it is ableism, and eugenics as well, frankly speaking, 444 00:57:14,200 --> 00:57:24,800 that this encroaches on. And those are very scary areas. You know, disabled people have the right to live, 445 00:57:24,800 --> 00:57:29,970 and I implore the Vice-Chancellor to look at this. 446 00:57:29,970 --> 00:57:35,730 So... these are these are my children on the right side of this slide here. 447 00:57:35,730 --> 00:57:39,840 They've grown up. They're teenagers now. But this is the cutest 448 00:57:39,840 --> 00:57:45,270 picture I could find of my son Hamza, here cuddling his baby sister at the time, 449 00:57:45,270 --> 00:57:56,040 poking her in the mouth to see what this thing is. So other disabled child in a traditional Pakistani family. My expanded family and community 450 00:57:56,040 --> 00:57:59,220 never expected me to amount to much. But definitely 451 00:57:59,220 --> 00:58:09,840 my parents refused it for me. And they always pushed me, sometimes literally, to work hard and achieve the best with my abilities. 452 00:58:09,840 --> 00:58:19,740 So these are, as I said, the cutest pictures of my family. My wife, here holding me up, is my rock. Her name is Humaira. 453 00:58:19,740 --> 00:58:25,380 She keeps me headed in the right direction, stops me falling over again, literally. 454 00:58:25,380 --> 00:58:33,810 We have two children: a son, Hamza, and a daughter, Haya. Hamza is now a growing teenager, 455 00:58:33,810 --> 00:58:40,290 he's got broad shoulders and everything, and Haya doesn't follow too far behind in age, 456 00:58:40,290 --> 00:58:45,370 and both are disabled themselves with their own impairments and I value their lives. 457 00:58:45,370 --> 00:58:48,120 I wouldn't ask for anything different at all. 458 00:58:48,120 --> 00:58:57,670 Their mum has made them both promise to at least achieve a PhD like I have, and then they can do what they want. 459 00:58:57,670 --> 00:59:07,680 So when Hamza was younger, he said that after doing his PhD he wants to be a bus driver, because he likes travelling, and he might get the Nobel Prize, 460 00:59:07,680 --> 00:59:18,540 if he was up to it. And then Haya said she did want to win The X Factor at some point after doing her PhD. So whatever they aspire to be, 461 00:59:18,540 --> 00:59:27,870 we have every confidence that they'll achieve their dreams, as long as they have those chances to do that. 462 00:59:27,870 --> 00:59:35,040 And just to end off, this slide shows Professor Stephen Hawking, a brilliant disabled scientist, 463 00:59:35,040 --> 00:59:41,910 starring as himself on an episode of 'Star Trek: The Next Generation', playing poker with Einstein 464 00:59:41,910 --> 00:59:46,410 and Newton, assisted ably by Commander Data! 465 00:59:46,410 --> 00:59:55,980 Professor Hawking made me feel so deeply proud to be disabled and a scientist, as he brought those two parallel universes together. 466 00:59:55,980 --> 01:00:03,900 For me, he was the epitome of achieving success as a disabled academic and scientist in this century 467 01:00:03,900 --> 01:00:12,980 we live. Thank you very much. CATHERINE: To introduce myself, I'm Catherine Walter, 468 01:00:12,980 --> 01:00:25,840 I am a member of the Disabled Staff Network, and the Chair of the Disability Advisory Group; and my colleague Paul Moorhouse, who is ably moderating this, 469 01:00:25,840 --> 01:00:31,930 was the lead on organising today's seminar. 470 01:00:31,930 --> 01:00:37,600 And I thank him for that. I thank Hamied for his wonderful presentation, 471 01:00:37,600 --> 01:00:46,960 and all of our colleagues who have helped out on this. We've had a lot of really interesting questions. 472 01:00:46,960 --> 01:00:58,000 So I'm going to try to ask Hamied to briefly answer each question, so that we can try to get as many people in as possible. 473 01:00:58,000 --> 01:01:15,240 So here's a question. 'I know that you, Hamied' this questioner says,'I know that Hamied is keen on taking an intersectional approach to his activism,' 474 01:01:15,240 --> 01:01:28,600 'I'd love to hear where he thinks the greatest opportunities and challenges lie in terms of disability and other aspects of marginalisation.' 475 01:01:28,600 --> 01:01:36,880 I'm going to try and copy paste that into the yes, I've pasted it into the chat as well. 476 01:01:36,880 --> 01:01:41,950 Great. Well, I think... This is a good question. 477 01:01:41,950 --> 01:01:45,810 And I can see in the question and answer, this is came from [...]. 478 01:01:45,810 --> 01:01:49,510 Am I allowed to say that? CATHERINE: No, you're not! 479 01:01:49,510 --> 01:01:54,550 I'm sorry. I'm sorry. OK. 480 01:01:54,550 --> 01:02:01,270 I think the opportunity in terms of intersectionality is that disability 481 01:02:01,270 --> 01:02:10,900 actually gets some exposure. Because otherwise we're always fighting this kind of, 482 01:02:10,900 --> 01:02:24,310 what do you call it, this hierarchy, and prioritising areas of EDI, and disability always comes up at the bottom, in my experience. 483 01:02:24,310 --> 01:02:32,620 So race, gender will generally be at the top, and then disability and perhaps sexuality as well will come at the bottom, 484 01:02:32,620 --> 01:02:42,340 in my experience. So intersectionality gives us a great boost in in kind of talking about... 485 01:02:42,340 --> 01:02:53,620 gender and disability, for instance, is a big one; because disabled women and disabled men have very, very different experiences. 486 01:02:53,620 --> 01:03:03,610 And I know that from my own personal experience: so what my sister, who's also disabled, has been through. 487 01:03:03,610 --> 01:03:13,400 I have no idea about what she's been through in terms of a woman, becoming a mother, even... you know, stuff like that, 488 01:03:13,400 --> 01:03:16,960 I would not know about. So there is intersectionality, right 489 01:03:16,960 --> 01:03:23,910 there at the big issues of EDI, if you like. 490 01:03:23,910 --> 01:03:38,970 Yeah, the challenges are about the people who lead those agendas, taking... wanting to bring disability into the conversation. 491 01:03:38,970 --> 01:03:44,490 Many people are kind of, I find, a bit scared around disability. 492 01:03:44,490 --> 01:03:56,960 But, you know, I think just having that conversation with disabled people will break 493 01:03:56,960 --> 01:04:07,040 that barrier down. I don't know if that answers the question very well. 494 01:04:07,040 --> 01:04:15,080 That's lovely. Here is a very short question. You can answer it in 10 seconds with a simple yes or no, 495 01:04:15,080 --> 01:04:24,710 probably: 'Is the environmental science sign language project with the Scottish Sensory Centre, or someone else?' 496 01:04:24,710 --> 01:04:28,850 I believe it is somebody called Audrey Cameron, 497 01:04:28,850 --> 01:04:41,810 I think the the BSL lady's name was not BSL lady... 498 01:04:41,810 --> 01:04:59,920 I think it is from the Scottish Centre, yes. CATHERINE: OK, thank you. Here's another question: 'Is the climate in academia and STEMM really changing?' 499 01:04:59,920 --> 01:05:10,220 'We see more honesty in a report and lots of consultations, but will it really improve equity?' 500 01:05:10,220 --> 01:05:20,810 I'm as sceptical as the questioner is around this. If there is change, it's very slow. 501 01:05:20,810 --> 01:05:24,060 And, you know, just from us talking about these things, 502 01:05:24,060 --> 01:05:32,900 it's clear that there's still so much work to do when it comes to disability equality or EDI in general. 503 01:05:32,900 --> 01:05:37,700 I mean, how long have we have things like Athena Swan in the sector, for instance? 504 01:05:37,700 --> 01:05:44,150 And still there are issues around gender equality, never mind any other area of EDI. 505 01:05:44,150 --> 01:05:46,820 So there's so much to do. 506 01:05:46,820 --> 01:06:00,440 I mean, when I was talking to the new CEO of UKRI, Professor Dame Ottoline Leyser, she was really enthusiastic, and actually said what I really believe, 507 01:06:00,440 --> 01:06:11,750 which is that the systems are not designed to include everyone. They're designed around 508 01:06:11,750 --> 01:06:21,920 white old males, cis-gendered, and that's how the system is set up. 509 01:06:21,920 --> 01:06:28,730 So it's not going to work for people who do not identify in the same way. 510 01:06:28,730 --> 01:06:37,550 So the system really needs to be changed. And to do that will take a lot more work to make it better. 511 01:06:37,550 --> 01:06:51,110 Thank you very much. Here's a question. I'm going to put the question up, but I think it's something we need to address after the seminar. 512 01:06:51,110 --> 01:06:53,480 This is a questioner who says, 513 01:06:53,480 --> 01:07:03,830 'I'm curious to know about the projections you showed on what increasing the employment rate for disabled people would do for the Exchequer?' 514 01:07:03,830 --> 01:07:14,600 'Where do they come from?' We'll get those references from you, Hamied, and we will email those out to the attendees when we send the post-seminar email. 515 01:07:14,600 --> 01:07:25,480 I know my good friend Jessica Boland is on the call, so I may well be going to her for some help on that one. 516 01:07:25,480 --> 01:07:31,380 OK, here is an interesting another interesting question. 517 01:07:31,380 --> 01:07:43,580 'Should higher education adopt a compulsory education model of internal support assistants, trained in higher education practice,' 518 01:07:43,580 --> 01:07:57,860 'who can be deployed where the need arises, rather than having to go through Access to Work?' which this contributor found was very unsatisfactory. 519 01:07:57,860 --> 01:08:04,520 So: Access to Work has its plus points and its negatives, but I do see your point, 520 01:08:04,520 --> 01:08:13,500 I think if that was going to happen, though, we would need... 521 01:08:13,500 --> 01:08:25,920 I don't see universities doing that about staff without the financial input. 522 01:08:25,920 --> 01:08:31,380 So these are arguments that we need to take up with the likes of UKRI 523 01:08:31,380 --> 01:08:36,510 and Wellcome and others, to provide the funding to do that kind of thing. 524 01:08:36,510 --> 01:08:40,980 I really like that suggestion of having more specialised support available, 525 01:08:40,980 --> 01:08:47,730 especially in science, because when you're in a lab or at an MRI scanner or something, 526 01:08:47,730 --> 01:08:58,380 then you need people who have more of that basic kind of science knowledge to assist in a more effective way. 527 01:08:58,380 --> 01:09:05,310 Although having said that, my PA is, you know, he's not a scientist, 528 01:09:05,310 --> 01:09:11,190 but he's very enthusiastic and very passionate about anything he can get his hands into. 529 01:09:11,190 --> 01:09:17,340 So, as I said, there's pluses and minuses in either way. 530 01:09:17,340 --> 01:09:24,260 But we need those big bodies to invest in any sort of thing like that. 531 01:09:24,260 --> 01:09:29,070 But I think it's a really valid point. I like the idea. 532 01:09:29,070 --> 01:09:35,310 So maybe let's try and do something about that. 533 01:09:35,310 --> 01:09:43,500 OK, our time is drawing to a close. And I apologise to the people whose questions didn't get answered. 534 01:09:43,500 --> 01:09:51,540 I will try to twist Hamied's arm to include answers to some of the more interesting ones, 535 01:09:51,540 --> 01:10:01,680 or the ones that cover more general questions, in our post webinar communication. 536 01:10:01,680 --> 01:10:16,220 But here's one last question. 'What would be your top tip for a disabled person entering work in higher education,' 537 01:10:16,220 --> 01:10:28,810 'be that in a supporting academic role?' So what's your top tip? HAMIED: My top tip is to take no sh*t. [laughs] 538 01:10:28,810 --> 01:10:39,040 You know, we all have rights. So use the services that the university provides. 539 01:10:39,040 --> 01:10:43,110 If they're not good enough, complain. Just, 540 01:10:43,110 --> 01:10:54,520 you know, make the system work for you, [laughs] is what I would say. And plug at it. Join NADSN. Be with us, and 541 01:10:54,520 --> 01:11:07,770 we can make good things happen. There are people coming into the sector, into STEMM, into academia and still struggling, 542 01:11:07,770 --> 01:11:15,720 And it really annoys me that those struggles are still happening. 543 01:11:15,720 --> 01:11:30,300 But yeah, don't don't take any sh*t. Get the university to do what it has to, and should do, to support you through that. 544 01:11:30,300 --> 01:11:34,080 So yeah, I'm afraid those are the only words I have right now. 545 01:11:34,080 --> 01:11:41,730 OK, find out. And don't take any sh*t. HAMIED: That's it. 546 01:11:41,730 --> 01:11:51,640 OK, thank you very much. I'm now going to call on Jasleen Jolly to 547 01:11:51,640 --> 01:11:57,040 give the vote of thanks and I'm going to try. Yes, Jasleen, please. 548 01:11:57,040 --> 01:12:05,320 Thank you. Thank you so much, Catherine. A huge thank you to Hamied for that fantastic talk. 549 01:12:05,320 --> 01:12:09,070 I know certainly how much for me 550 01:12:09,070 --> 01:12:20,020 both Hamied and NADSN have been really supportive, and have helped increase disability on the agenda for my department in Oxford. 551 01:12:20,020 --> 01:12:31,540 So it's always great to hear from him, and his enthusiasm, and his can-do attitude, which I think all of us can take a lot from. 552 01:12:31,540 --> 01:12:42,850 I think we can't do a round of applause, but I hope everyone can join me in virtual applause for Hamied for that superb session. 553 01:12:42,850 --> 01:12:51,760 I would also like to extend my thanks to the Disability Advisory Group, and particularly Catherine Walter and Paul Moorhouse, 554 01:12:51,760 --> 01:13:00,460 who've put a tremendous amount of work in to make today happen. I'm so grateful for all the effort they've put in. 555 01:13:00,460 --> 01:13:11,290 And Sarah Stephenson-Hunter, who is our Disability Advisor for staff here. It's such a wonderful team to work with. 556 01:13:11,290 --> 01:13:19,307 So Hamied, Catherine, Sarah, a huge thank-you for this wonderful event today.