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Sight loss should not mean a fading academic career

<ÁñÁ«ÊÓƵ class="standfirst">With the right support, academics with visual impairments are prospering, but barriers to true inclusivity remain, says Kate Armond, while a lecturer reflects on how practice on reasonable adjustments can fall short of policy
May 23, 2024
Silhouettes of unrecognizable people in motion blur walking on an urban staircase to illustrate Academic life with sight loss
Source: Anki Hoglund / Getty Images

Six months ago, Ghana¡¯s University of Cape Coast appointed its , Carruthers Tetteh, to teach law. A month later, in January¡¯s Australia Day Honours list, Paul Harpur, a professor at the University of Queensland¡¯s Law School, was awarded a , to add to his success as a Paralympian and champion of human rights. Last month, lecturer made headlines for his work supporting and educating blind children in rural areas of India, where their disability is viewed as a curse, and some are abandoned by their parents or beaten and starved to drive out evil spirits.?

Passionate, charismatic, blind from childhood, these lecturers and their stories suggest a changing world of inspiration, influence and inclusivity. My own research into the careers and experiences of sight-impaired lecturers has revealed a much quieter, more private and diffident presence within the academy and enduring problems?that cause many talented individuals to struggle or leave.

My research began in an informal way 20 years ago, when, as a sight-impaired UK undergraduate, I listened to a lecture delivered by an academic with multiple sclerosis. He arrived in the ground floor lecture theatre in his wheelchair, spoke with some difficulty, but always with enthusiasm for his subject, and welcomed conversation afterwards. He held our respect and our attention, and he was the first academic to speak to me about sight loss and working in higher education.?Even at that early stage, I knew that I wanted to teach university students, and he made me feel it would be possible.

Without my sense of him as encouraging, talking about his work with humour and honesty, I might have been overwhelmed with doubt at many stages of my academic career. In the past five years, my formal research has expanded to engage with the organisations that support sight-impaired employees and advocate for equality so that I can balance recording experiences with offering the right advice and potential solutions.

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While many enlightened universities are busy anticipating reasonable adjustments and creating accessible environments, I have heard from academics who are still reluctant to share the details of their disability or to follow up requests for reasonable adjustments when the adjustments are not forthcoming.


Campus resource: How to create an inclusive learning environment for visually impaired students


I completely understand this. When I began lecturing and teaching as a PhD student, I shared the details of my sight impairment with just three people: my primary PhD supervisor, the university¡¯s disability adviser and one friend. Rachel, my PhD supervisor, is the best example of a supportive colleague. She accepted without fuss or questions what I wanted to share about my sight problems, and she would talk me through work that she had read, marked or collaborated on as an instinctive response to my situation, rather than overloading me with emails and text. She let me make voice recordings of our meetings if I wanted to.

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I did not apply for reasonable adjustments with my other teaching tasks, however. I worked at the weekend rather than unsettle deadlines. I endured the dread of manoeuvring in the Stygian gloom of the lecture theatre. And I presented as more than usually anxious when delivering lectures as moving my eyes from large-print notes to the faces in front of me made refocusing impossible. The module leader would insist ¡°You need to look up more!¡± and I would blush and feel disheartened and frustrated.?

I moved absurdly slowly with my tray in the staff canteen and I used my long, telescopic monocular surreptitiously as I scanned the titles on the top shelves in the library ¨C not dissimilar to Johnny Depp¡¯s telescope use in Pirates of the Caribbean. I reasoned and sometimes argued with obstinate, sighted students who refused to relinquish their place at the assisted-technologies computers in the university library and religiously avoided social events. Like so many employees with sight impairments, I was cautious and lacking in confidence, worried about being seen as a problem or creating extra work, and I was not well informed about disability and law.

My knowledge about inclusivity and equality in the workplace has improved slowly. Particularly supportive have been the UK¡¯s Royal National Institute of Blind People (RNIB), the Equality and Human Rights Commission, the support charity Scope and the Equality Advisory and Support Service. Understanding that employers have a legal duty to provide reasonable adjustments for disabled employees under the Equality Act of 2010 was life-changing. I realised that it is my responsibility to ask for these adjustments and to explain how my sight impairment impacts my working life, not just for my own benefit and so that I can do my job well, but to familiarise universities with this process. Workplace adjustments are the single most important factor in helping disabled people remain in work. For your blind or partially-sighted colleague, emailing in a bold simple typeface, arranging meetings in accessible rooms or producing module information in Braille, large-print or audio formats not only allows them to work with confidence and ease, it also registers respect and goodwill.?

Many people with sight loss choose not to have a guide dog or use a cane, and some academics are further bewildered when their blind or partially-sighted peers experience fluctuations in their sight; I was registered as blind in 2000. My vision later improved after surgery but is now deteriorating again. Rather than remain enigmas, however, partially-sighted academics can help colleagues with simple, factual explanations of their visual difficulties at the beginning of working relationships. I have moved from using similes in which the world becomes a fairground hall of mirrors to drawing images of a loss of visual field.

Sight loss can impact an academic career at any age. During my research, lecturers as young as 22 have contacted me to discuss diagnoses that will prove degenerative in terms of their vision. Diabetes, thyroid problems, cancer, the side-effects of cancer treatment, multiple sclerosis, benign tumours, accidents and contact sports: all of these have led to visual impairments for academics in the UK.?

Feedback and case studies have also helped me to understand the effects of ocular diseases such as glaucoma, macular degeneration, retinal detachment and retinitis pigmentosa. The more lecturers there are who reach out for adjustments and stay in post, the more adept universities will become at integrating this spectrum of sensory disability into the fabric of higher education.

Even if you have been in post for some time, it is still essential to get clear, written confirmation of all of your duties for planning and securing reasonable adjustments; ask well in advance for reading lists, a breakdown of when each topic will be taught and your lecturing responsibilities. Similarly, it¡¯s important to have this information before accepting any new post.?On one occasion, a senior academic talked me through my teaching and pastoral responsibilities and I naively felt confident in accepting the job. During the first week of term, however, a lecturer from another department appeared at my office door to inform me that I also had to produce an additional four lectures for some of his modules that term, on subjects that had nothing to do with my work, discipline or research. My meticulously planned and prepared work schedule for the next 10 weeks capsized.

When I appeared hesitant, his response was that he hoped I was going to ¡°cooperate¡±. Suddenly, a disorganised stranger had turned me into a difficult individual who was ¡°not getting off to a good start¡±. Sadly, my research has revealed that he is not the only academic to translate the vulnerability of visually impaired colleagues into pressure to prove ourselves to be capable and ¡°team players¡± while overburdening us.?

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Whether you are a new member of staff or an established employee, having the right evidence of your visual impairment is also helpful. A consultant ophthalmologist will provide certification of a diagnosis, and the patient will be recorded as severely sight-impaired (blind) or sight-impaired (partially sighted). Although some lecturers have secured support without official documents, this certificate is the gateway to protection under the 2010 Equality Act. Your most important ally and point of contact is your line manager: they will then contact the university¡¯s occupational health team, who have the expertise to assess needs and implement accessing technology such as video magnifiers and software. Discussing your disability with human resources if you are new to the university is also an option, and the RNIB offers work-related assessments, makes recommendations and communicates these directly to your manager. ?

Having a list of your professional responsibilities can also help you to focus in a positive way on what you could do once the right reasonable adjustments are in place. Share what you love about your subject, your role and your institution when negotiating for adjustments, and be prepared to be flexible and realistic about where you struggle. One of the most heartening details of my research has been learning about a readiness to exchange responsibilities within job descriptions among co-workers. And sensitive decisions around timetabling?have allowed me and other sight-impaired lecturers to leave before rush hour, pace our working day and structure contact time with students to enable more working in the home environment if this is helpful. ??

With our sector under huge financial pressure, however, many academics are worried about the financial cost of asking for support. Beyond ensuring fair and predictable workloads, reasonable adjustments can include altered lighting, tactile signage and alternative formats and software for reading work-related documents ¨C all of which are the responsibility of the university.

The government¡¯s Access to Work scheme can fund far more. These grants are available to lecturers living and working in England, Scotland and Wales and are not affected by how much an individual earns; the only negative is there can be a waiting list. This scheme has enabled visually impaired academics to employ support workers, note takers or workplace mentors. It can also fund practical changes to offices or equipment and the development of hybrid working, as well as cover?travel or training costs. For those considering a move away from the pressures of full-time positions, the grant also covers internships, placements and part-time employment.

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These alterations are both appreciated and essential for sight-impaired scholars, but some believe this paradigm of ¡°adjustments¡± is unambitious and, ultimately, inadequate. Instead of persisting with the ableist narratives and structures of higher education, the ¡°authoring with integrity¡± initiative suggests that the sector¡¯s practices should begin with accessibility as their premise rather than helicoptering in ¡°adjustments¡± as an occasional afterthought.

This idea is currently engaging and unsettling academics in equal measure. In the past year, I have attended academic conferences, research seminars and online forums where it has provoked strong emotions, including controversial and, at times, offensive counterarguments, as well as?really intelligent and informed discussion. Authoring with integrity has been received variously as positive discrimination gone mad, a rational and fair way to ensure inclusivity or a pipe dream.

In this space, authoring is not restricted to writing about equality: it extends to include designing, instructing and innovating. Those with a disability should write, advise, teach, interview, regulate, conduct professional development courses and preside at the highest levels within universities, but there are so many flawed or inadequate interventions, however well-intentioned, made by those who do not have the lived experiences and the diagnoses themselves.

If you want to see authoring with integrity in action, turn to , a groundbreaking and enchanting children¡¯s programme launched?last November?about a sight-impaired bear, a disabled cat and an able-bodied rabbit. Its sight- and hearing-impaired creator, Rebecca Atkinson, had become frustrated at the lack of realistic representations of disability in children¡¯s toys. She has also ensured that disabled actors and newcomers voice the parts. Fairy dust and magic spoon aside, the Mixmups¡¯ adventures are presided over by the Lucky Loover Bird. Its watchwords?¨C?¡°there¡¯s always another way¡±?¨C?greet situations where disability presents difficulties, and the programme is already winning awards and fostering a remarkable culture of inclusivity in our youngest generation.

My students think this is compulsive viewing for everyone. It is ironic that in the same month that the last of my feedback sheets from sight-impaired lecturers were returned, some containing upsetting examples of discrimination, my youngest nephew and his peers are busy making Mixmup-style participation for their disabled friend the premise for all of their games, parties and school activities.

Kate Armond has taught literature and international modernism at the University of East Anglia and the University of Essex. She is now senior lecturer in literature and critical theory. The research for this article was made possible thanks to the Royal National Institute of Blind People (RNIB) and the Equality and Human Rights Commission.

Woman on a spiral staircase looking down in a building to illustrate sight loss struggle
Source:?
Ti-ja / Getty Images (edited)

<ÁñÁ«ÊÓƵ>Making work work: Ask for adjustments and be prepared to help yourself

If there is anything more central to my job than reading and writing, I¡¯m not sure what it is. I spend most of every day reading, mainly on a computer: reading articles for my teaching and research; preparing lectures and seminars; delivering teaching. So it¡¯s immensely frustrating to be unable to see properly?¨C especially when?other people are usually completely unaware of my difficulties.

I first experienced problems with my vision in 2010, when I suffered an attack of optic neuritis in one eye. This left me with a patch of vision that was partially obscured. Subsequently, I was diagnosed with multiple sclerosis and had further relapses, involving sensation and mobility. Having recovered from these and got used to life with MS, I experienced a second bout of optic neuritis last year, in my ¡°good¡± eye, leaving me with both eyes affected. I was devastated and (impotently) angry. It¡¯s unusual for both eyes to be affected, though not unheard of; I found myself wondering why I had to have this particular profile of symptoms, rather than any other, given the importance of good vision for my work. But who doesn¡¯t need to be able to see well? And what would be a ¡°good¡± symptom profile to have? Mobility issues? Spasms and incontinence? Cognitive dysfunction?

I started to get used to the impairment and how to manage it. Damage caused by optic neuritis is particularly sensitive to heat (both body and environmental heat). This means I have to make some odd requests, which can be met initially with bemused responses from my department. Why do I need access to a freezer at work? Because drinking iced water is one way for me to recover my vision more quickly. Why is the lecture room I¡¯ve been assigned not adequate? Because it¡¯s overcrowded,?is at the top of six flights of stairs and has no windows I can open when I've climbed them because the lift is out of order. So I cannot cool down and cannot read my notes to deliver my teaching.

On a recent visit as an external examiner, I got so hot and flustered finding my way to the right room that I couldn¡¯t see when I got there. Luckily, I had explained in advance what issues might arise, so they provided me with iced water and a cool room, and I was able to cool down and do the job I was there for.

I have (eventually) been assessed by occupational health, and a report was issued listing any adjustments needed. Actually getting these put in place, though, is another matter. Though the freezer access I asked for was at one point in train, it got lost in changes in admin personnel and I¡¯ve given up asking. Now, I just go and buy myself an iced drink from the nearest cafe. At ?3.50 or so a time, this goes against my policy of saving money on lunches and drinks by bringing my own, but needs must.

I need a new laptop as mine is on its last legs. It is possible to borrow one from IT services, but they are all 14-inch screens (too small for me to enlarge and read documents easily), and when I enquired if a larger one could be loaned (not given) to me, I was told that I didn¡¯t need one since I have been given a monitor in my office and at home. But most of my job is teaching, so the times when I am not in my office or working from home, what then? Again, I have given up asking, especially since I am on a temporary contract so feel awkward making a fuss.

Probably the main thing I have learned through having experienced this disability is that you have to do a lot of legwork yourself. You have to keep asking, keep pushing, even if the right boxes have been ticked ¨C for example, occupational health devolves to departments the responsibility for determining what is a ¡°reasonable adjustment¡±. Sometimes it¡¯s easier just to muddle through and find your own solutions.

The author is a social sciences lecturer at a Russell Group university.

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<ÁñÁ«ÊÓƵ class="pane-title"> Reader's comments (4)
Ultimately, we all have to "find our own solutions", because we know best about what we can and cannot do. What the rest of the world needs to do is learn to listen. If I say I cannot do something, it's not being "difficult", it is a statement of fact... and a starting point from which to discuss what is actually needed and how it might be accomplished in a way I can do.
Fantastic read! Great to see the strides you have made in improving your environment to suit you not just for yourself but for any others that follow. As someone in professional services who is dealing with a degenerative macular condition often the autonomy to manage tasks in your way to support your availability better can be seen as causing issues or deviating from the process however open and honest conversations with managers who want to listen can make a huge difference.
As the article and all the responses show, universities need to support staff, not see them as difficult. A forgotten group are those with severe allergic reactions to animals. You are on your own if you are one of them as increasingly animals are allowed into buildings including offices and teaching spaces. I hope that no one dies before this is taken seriously.
Great, great article, thank you for sharing and informing. I was very distressed on a project recently which had strong equality, diversity and inclusion credentials at the refusal of colleagues from a different university to write emails in Clear Print Sans Serif 14 left aligned etc or publish our report to those standards or to engage with wider equality standards for example not to use "&". It felt like a "badge of pride" not to change their own practice whilst engaging with other equality, diversity and inclusion themes. Interesting too that my copy of Windows now will aid me to be more accessible in my communication although I think the factory settings are still weeny size 11?
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