• Accessibility is fundamental in science communication and benefits everyone
• Captioning is a simple and effective way to make a difference
• Embrace captions to enhance your communication and reach a broader audience

The Faculty of Brain Sciences Disability Equity Committee and the Digital Accessibility Team are on a mission to foster a more inclusive and accessible environment for everyone. This includes people with a hearing impairment or are deaf. With approximately 12 million adults in the UK affected by some form of hearing loss, we believe it’s crucial to address this issue and enhance accessibility within our academic and professional community.

Make the change today!

We are asking everyone to switch on their captions when using digital platforms like MS Teams, Zoom and when creating PowerPoints to increase the accessibility of meetings, presentations, and lectures. Check out the Digital Accessibility Services website to find out just how easy it is to switch on caption in MS Teams, Zoom and PowerPoint. It takes seconds. Such a simple action will make such a big difference to everyone in our community.

This blog is co-authored by Disability Equity Lead Dr Elise Crayton and Rikesh Rajani.

As part of Disability History Month this year, I thought it would be meaningful and interesting to shine a spotlight on a newer long-term condition: Long COVID. I am sure, given the media storm that has surround Covid-19 for the past few years we have all heard the term Long COVID but really do any of us know what Long COVID is and what Long COVID can look like and the challenges it presents for those living with it.

What is Long COVID?

Whilst most people who contract COVID-19 recovery fully within a few days or up to 12 weeks later, some do not with symptoms that linger and last much longer. For these individuals, we would consider them to have Long COVID, sometimes described as post COVID-19 syndrome. However, as this condition is new, we are still working to understand it and there are lots of different strands of reach taking place to do this.

If you are looking for more information, the best first resource to access will be the NHS website.

What impact does long COVID have on the UCL community?

There will be many students and staff across campus who are living with Long COVID, whether this is diagnosed or suspected. The symptom profiles from person to person also greatly vary. The most common symptoms include (according to the NHS):

• Fatigue
• Shortness of breath
• Loss of smell
• Muscle aches

However, many people report experiencing other symptoms like: brain fog (issues with memory and concentration), pain or tightening in the chest, heart palpitations, dizziness, insomnia, depression, and anxiety among others. Many people also find that their symptoms get much worse following even small amounts of mental, physical or emotional activity (known as post exertional malaise/post exertional symptom exacerbation).

Therefore, those living with the condition may find usual daily activities on campus challenging such as walking across campus or concentrating in meetings or lectures. Some with Long COVID may also be more susceptible to infection, or feel less confident about mixing in large groups as we did before COVID-19 struck, making many of the vibrant and exciting activities that take place on campus and within academia difficult to engage with.

What can we be doing to support those living with this condition?

There are always positive and easily implementable things we can think of doing to support our colleagues and students with Long COVID. Often these types of changes will not only benefit those with Long COVID but many if not all of the community here at UCL.  I do think we need more data and evidence to more robustly understand the types of strategies or interventions we could recommend to help, but I do have a few suggestions that I will present below that I think could have small, but meaningful impact on those with this condition.

1. 1. Utilise the Reasonable Adjustments/Summary of Reasonable Adjustments (SoRA) schemes within UCL.

a) Line managers and supervisors or personal tutors can support their students and staff to identify some of the person centered approaches to supporting them to study and work successfully on campus via these schemes.

1. 1. Ask the question: Do all our meetings/social gatherings need to be in person?

a) There are of course many benefits to in person meetings and social gatherings. However, there may be some instances where meetings or social gatherings could take place in a hybrid format (to allow those who find accessing campus harder to stay at home) or even in a remote format, utilising MS Teams or Zoom.

b) To help people with Long COVID avoid reinfection, you could also consider holding social gatherings in a COVID safe manner, such as by having them outside or asking people to do a COVID test beforehand. This can also be helpful for other people living with conditions that increase their clinical vulnerability.

1. 1. Where appropriate, record meetings, lectures and other presentations or use live captioning

a) Whether a meeting is taking place in person or online, having a meeting recording, captioning or a transcript of a meeting could be vitally important for those who are struggling with concentration or having memory issues. This can also be useful for others though, perhaps those who experience hearing loss and deafness, those with neurodivergence or any one of us who is working in a busy and chaotic environment.

1. 1. Create and encourage a supportive environment within your team or course.

a) It sounds obvious, but if staff and students feel that they can easily approach others to ask for help if they are experiencing challenges from Long COVID, then it means they are more likely to get the help they need. We may also decrease the chances of students exiting their studies and staff leaving their roles.

b) You can take small, simple steps to do this like:

i) having fortnightly coffee mornings (remote or in person).

ii) having clear, structured processes describing who to contact if you need more support

iii) having clear, structured processes describing who to contact if you need more support

iv) editing your email signature to request that people let you know if they have any needs or adjustments (as it indicates you are open to having these discussions.

v) requesting informal feedback following meetings, lectures or other presentations to sense check whether the format is inclusive

Overall, there are lots of small, simple things we can be doing to ensure that UCL continues to grow and develop into an equitable and inclusive environment. This will have such an important, positive impact on those living with conditions like Long COVID, but in reality will greatly benefit all of us.

Written by Indie Beedie, from the Faculty Disability Equity Team

Haben Girma is a disability rights lawyer and the first deafblind graduate of Harvard Law School in 2013 with a strong appetite for social justice. She interned at the U.S Department of Education’s Office for Civil Rights and was named a White House Champion of Change during the Obama administration. She has also gone on to receive the Helen Keller Achievement Award and a spot on Forbes 30 under 30. Haben advocates for equal opportunities for people with disabilities and believes that disability is an opportunity for innovation and inclusion benefits all of us not just disabled people.

She was raised in the San Francisco Bay Area after her parents fled Eritrea as refugees of Civil War in the early 1980s. Haben lost her vision and hearing as a result of an unknown progressive condition beginning in early childhood, as a child she had some residual vision and hearing and she currently retains 1% of her sight. She has an older brother, Mussie Gebre, who is also deafblind, he did not benefit from access to technology and education in Eritera unlike Haben did when the family moved to America.

She found herself having to advocate for herself when she went to Lewis & Clark College where she found she couldn’t access the cafeteria menu. She successfully challenged the cafeteria manager that she was entitled to an accessible menu through the Americans with Disabled Act. From there, she discovered that advocating for her own rights benefited everyone, not just herself and went on to become a lawyer to increase access to books and other digital information for people with disabilities.

Now she focuses on the development of accessible digital services calling on programmers and technology designers to use this power to increase access for people with disabilities. She also empowers students with disabilities to become self-advocates and teaching families and educators to set high expectations, through sharing positive disabled stories and asking people to change their negative assumptions and fixed world views.

Haben communicates by connecting a computer keyboard to her braille note-taker which allows her to read the letters a person types on the keyboard in real-time braille and uses the assistance of a guide dog. She frequently points out the different methods that deaf-blind/disabled people use to gain access and that not everyone uses the same technology she does.
When she’s not advocating, she surfs, rock climbs, cycles and during her time at Harvard she competed on the Harvard Ballroom Dance team. She would prefer not to be called inspiring, but living in defiance of great social and physical barriers.

We could all learn to be more ‘Haben’ in advocating for ourselves and others in creating a more accessible environment for all.

If you would like to see more of Haben Girma, in 2014 she gave a talk at TEDxBaltimore where she confronts TED for not providing captions for TEDx talks, including her own. In August 2019 she released a memoir, Haben: The Deafblind Woman Who Conquered Havard Law

written by Nicola Ridgway, Veronia McConochie and Ash Talwar, from the Faculty’s Disability Equity Team.

Dorothy Hodgkin (12th May 1910 – 29th July 1994) was awarded the Nobel Prize in Chemistry in 1964 for her work solving the atomic structure of molecules using x-ray crystallography. Her important findings included discovering the three-dimensional biomolecular structures of steroids, penicillin and insulin.

Dorothy became interested in crystals at around the age of 10 when a family friend gave her a chemistry set and she spent many hours in the attic at her family home doing experiments. When she started secondary school, Dorothy was told that she would need to take needlework classes whilst the boys studied chemistry. She didn’t let this stand in her way and successfully petitioned (along with a friend) to be allowed to study chemistry alongside the boys. After school she secured a place to read chemistry at the University of Oxford. During her fourth-year she conducted a research project to investigate the crystal structure of dimethyl thallium halides, and this provided the launchpad into a career in crystallography.

After graduation, Dorothy went to do a PhD at the University of Cambridge, focussing on the crystallographic investigation of steroid crystals. This work underpins much of her future career. Following her PhD, Dorothy returned to Oxford to take up a position at Sommerville College, University of Oxford where she remained for most of her working life.

At the University of Oxford Dorothy investigated the structures of a range of biological molecules which eventually led to her Nobel Prize. Her work was vitally important and her work understanding the structure of penicillin in 1945 (the first antibiotic) allowed its synthesis in large quantities, overcoming an important hurdle in its wide-spread use. Furthermore, her work understanding insulin enabled the mass production of insulin as a possible treatment for diabetes. Dorothy also tutored many influential students, including Margaret Thatcher (past prime minister), who hung Dorothy’s portrait in Downing Street during her time as prime minister and reportedly asked for her opinions on a range of scientific and political matters.

During her PhD, in 1934, Dorothy first visited a consultant about pain in her hands. The Dr observed some deformity in her hands caused by swelling in her knuckle joints and prescribed rest. A prescription that Dorothy struggled with as she wanted to finish off some experiments. Dorothy was diagnosed with a painful autoimmune condition, known as rheumatoid arthritis (RA). In RA, the immune system attacks health cells and tissues in the joints (such as in the hand, feet and wrists), causing them to become inflamed and damaged. Although Dorothy experienced some pain during her PhD, her first major flare up occurred at the age of 28 (in 1938). After taking some sick leave, she returned to her lab to find she could not operate some of the equipment needed for her work due to the stiffness and deformity in her hands. However, Dorothy did not let this stop her and she instead made aids (e.g. long levers for switches) which would allow her to continue to work. As the condition progressed, Dorothy often required a wheelchair as walking became too painful. Despite these setbacks, Dorothy continued with her demanding work and attending global events until her retirement in 1988 (aged 78).

Dorothy’s legacy remains to this day, not just from her work but also through the Royal Society Dorothy Hodgkin Fellowships that are awarded each year to early career researchers. These fellowships allow early career researchers to continue their careers on a flexible basis to accommodate personal circumstances, such as caring responsibilities or health-related issues.