Category Archives: Disability and Illness

Issues facing those with both long and short term disabilities and illnesses which impact their ability to work or study at Newcastle University.

Be Kind: Living with a Hidden Disability

This month, as part of UK Disability History Month (22nd November – 22nd December) and International Day of Persons with Disabilities (3rd  December), we’re focusing on disability.

In the UK today, there are 13.3 million people living with disabilities. For many of these people, you wouldn’t know they have a disability just by looking at them. They don’t use a wheelchair, or crutches, or hearing aids. Yet their condition continues to affect their quality of life just as significantly, leaving them in constant pain or making simple day-to-day tasks very difficult. These disabilities are known as ‘hidden’, ‘invisible’, or ‘unseen disabilities’.

For many effected by a hidden disability, they are often ignorantly and unfairly labelled as “attention-seeking” or “imagining it” by those who do not understand the impact of these conditions on a person’s daily life.

To help you understand what it’s like to live with a hidden disability, a member of staff has written a personal account about their experiences:

“You’re not old enough to have arthritis?”

“You wouldn’t know you have arthritis – you look fine!”

If I had a pound for every time these things have been said to me, I would be very wealthy.

I was diagnosed with Rheumatoid Arthritis (RA) when I was 25, in 1996. Just to get to a point of diagnosis was a struggle. It took 18 months of recurrent visits to my GP with pains and stiffness in different parts of my body, being told there was nothing wrong with me, to the point that I believed I was imagining the symptoms before the Rheumatoid Factor decided to show itself in my blood results.

A diagnosis was a massive mental milestone, as I could finally put a label on what was wrong with me. Following diagnosis, it was a further six months before I crept to the top of the waiting list and was able to see a consultant, by which time my weight had dropped dramatically, several of my joints were painfully swollen, and I struggled to complete mundane tasks such as making a cup of tea or doing up some buttons. Finally getting a treatment plan was another milestone and then the realisation of a lifetime of hidden, chronic pain slowly began to dawn.

RA is like being on a never-ending rollercoaster – I do not have pain free days, but some days are better than others. Also, I constantly feel tired. Chronic fatigue (a little-known symptom of RA) is a most unwelcome guest when looking after a young family and elderly parents.

I take a whole host of medication, both daily and weekly. The weekly medication is not pleasant and is not something I relish taking every Sunday evening. Yet, like many people with hidden conditions, I carry on, as I’m determined that this condition, although limiting how I live some aspects of my life, will never defeat me.

I do not say all this to garner sympathy. I do not, and never want to be, defined by my RA, and the last thing I want is to be pitied. Having lived with chronic pain for over 20 years, I have found workarounds for everyday activities, so that only those closest to me know when I’m having a bad day.

Around 1% of the population in the UK has RA, and this is only one of a number of conditions where a person’s illness, limitations and pain remain hidden. Being diagnosed with RA turned my life upside down, but despite this I have learned some very valuable lessons and now, more than ever, realise the importance of being kind, patient and understanding, as we can never automatically know the challenges family, friends and colleagues face in their everyday life.

So please do not judge. Instead:

  • Be kind to the person who is walking too slowly for your liking.
  • Be kind to the person in the supermarket who asks for help to reach something on the shelf.
  • Be kind to the person who appears able-bodied who has sat in an accessible seat on the train.
  • Be kind to your colleague who is too tired to interact.
  • Be kind to your friend who cancels a night out at the last minute.

Be kind, as you can never know the journey people are on and the barriers they have overcome (whether RA or another hidden condition) to get where they are today.

To find out more about hidden disabilities, please visit the Invisible Disabilities Association’s webpage. Or, email us at to find out how you can get support, or help support others.

The Disability Interest Group (DIG)

The Disability Interest Group (DIG) is for anyone who wants to help promote a positive, safe and respectful environment for disabled students, staff and visitors. It’s a joint network, open to all disabled and non-disabled staff and students at Newcastle University.

Today (22nd of November) marks the first day of UK Disability History Month, which focuses on the history of people with disability’s struggle for equality and human rights in the UK. This month includes International Day of People with Disabilities (3rd of December), which is the day that the DIG is hosting their celebratory event, to highlight and celebrate the successes of this year and to update people on what is coming up in 2019. The event will also include a talk by Liam Isaac, NUSU¹s Inclusive Sport Officer about his great work in improving access and inclusion in University sport. The event will run 12-2pm in the courtyard, and lunch will be provided. Please book here.

To find out more about the DIG and the work they’ve been doing, I spoke to Richard Boggie, Assistant Director for HR strategy and member of the DIG committee.

Why was the DIG formed?

The network was relaunched in October 2017, with Jackie Leach Scully as Chair. We were inspired by the success of other networks, such as NU Women, and by the increased interest across the board in staff networks and EDI in general. We wanted to ensure disability issues weren’t going to be forgotten or left behind in this shift, and so we relaunched the DIG. Importantly, as part of this relaunch, we redesigned the network to be not just for people with disabilities, but also for allies.

Why did you join the DIG?

I’ve always been involved with the DIG before it was relaunched. I wanted to use my background in HR to help affect change, and from a professional point of view, I wanted to know if things weren’t working for those with disabilities. But also, from the point of view of a disabled person, I wanted to feel as though the University is doing all it can to make the experience inclusive and accessible for everyone.

For me, the network is about having a safe space to discuss openly the issues affecting me, so that I can seek help, as well as helping others facing similar issues.

What do you feel the DIG is important?

Above all, we want the DIG to be a safe, supportive environment. For many of our members, they are the only disabled person working in a unit or in their peer group, which can be a lonely experience. The DIG helps these people to feel as though they are not alone, and to talk to others who’ve had similar experiences and have worked out how best to deal with them. For this reason, a large part of our network is based around signposting to access support and advice.

Although our membership represents a large range of disabilities, we often have similar experiences, so are able to have a joke as well as share what is troubling us, because it’s a safe environment. It is also good to bring together a range of different disabilities, to learn about them and highlight common issues.

Finally, we’re also a resource for others. If individuals or departments want help with disability issues, we have members that can advise them. We can also talk directly to University services to make changes. For example, if we’re informed something is going wrong in an area such as estates, we can go directly to them to talk about it.

Can you tell us a bit about some of the things the network has been doing this year?

The work we’re probably most proud of this year is the adjustments we’ve helped make to the recruitment and induction process for staff, as it will benefit so many staff members. We feel this was done in a really inclusive way, by holding workshops and focus groups with our members, in which we looked at their experiences and what they hoped the process would look like to develop actions to improve the experiences of staff joining the University in future.

We have also felt extremely supported by the University this year. We secured funding from the EDI Fund and from Student Wellbeing for a live captioning service for University events and talks, which is currently being trialled. One of our committee also bid for some money to create some more representative images of staff and student diversity at NU for use on University communications and the website. If you’d like to volunteer to participate in this photography, please contact Becca Wilson.

We’ve also been able to take forward issues raised by our members to the committees we sit on and make important changes, such as ensuring all accessible toilets have working emergency cords.

Where you might see the network going in the future?

This year, we’re hoping to build on the success of our first year by growing our membership and running more events for all members to attend. In particular, we’d like to focus on running more positive, celebratory events. So far, we’ve done a lot which looks at what we can improve and change within the University, so now we’d like to think about what has been successful and celebrate this. This is what we intend our event on the 3rd of December to be.

I also hope that DIG will be able to influence University policy properly, in particular on recruitment and induction, and on accessibility at events. We’re also looking to work with the student disability society (Disability and Neurodiversity Society) to influence student issues.

If you’re staff or student with a disability, or an ally, and you’re interested in getting involved with the DIG, visit our intranet page to find out more about them. You can also follow them on Twitter, or join their mailing list. Their celebratory event will be hosted on the 3rd of December, so sign up to come along! 

It can tell us a lot

Next week is Jeans for Genes day, a UK-wide fundraising event to raise money for children with life altering genetic conditions. As someone who has worked with children and families affected by chromosomal conditions such as Williams syndrome and Downs’ syndrome, I have always been struck by the resilience and determination of all those affected. Also their positive approach to ‘just getting on with it’, usually still with (the biggest and brightest) smiles. When I first began my work with these families, I was met with the same word over and over: Heterogeneity. Compared to what I’d read and researched about individuals with autism, a disorder with no known genetic marker and huge amounts of variation from one individual to the next, my expectations of those with Williams syndrome were that they were all going to be ‘the same’. Which couldn’t have been more wrong. Because even in ‘heterogeneity’, where by definition there is uniformity, the reality is huge amounts of diversity. No child I ever worked with, even with the same standardised ability score or genetic deletion, was ever ‘the same’. And this is where diversity is not just something that makes working with the families more of a pleasure, but becomes scientifically important. Because those small, tiny differences might be the key to what tells us more about a particular disorder: How biology interacts with environment, or where we can target change. Working with the families affected by these disorders was, without doubt, the most enjoyable, rewarding and memorable part of my PhD experience. So get involved in Jeans for Genes day and hear more about the fantastic work these charities do. And the amazing, diverse, bunch of people you could be supporting…

Blood Matters

Bright Red logo

Did you know that September was blood cancer awareness month? In order to promote and share all of the excellent research that Newcastle University does on blood cancers and the fight against them, our Institute of Cellular Medicine are running a research day in collaboration with Bright Red, open to the public. Laboratory Manager Sarah Pagan has written a blog post with more information.

The event will take place on 23rd September and registration is free so get signed up today!

Annual event?

Empty conference

With the new academic year just about upon us, the Guardian has published two articles online this week about the accessibility of academic conferences. The first focuses on disability and how too many conferences, perhaps without intention, exclude a large disabled contingent simply by the nature of their design. The article claims that accessible routes on transport, access to rooms and lecture halls, and often long and intensive days all act as significant barriers for anyone with a disability. Importantly, the article also address the more ‘hidden’ disabilities, such as the social difficulties someone with autism might face at a large conference dinner, or the stresses associated with needing to follow a strict diet without reassurance this will be provided.The fact is that worries about these potential obstacles to a smooth conference are preventing certain academics from attending them. Which means we are missing out on their expertise, ideas and knowledge when relatively simple measures could be put into place to make their experience better. It might not be intentional. But it’s still discrimination.

Another barrier to access at conferences highlighted in a different article is a financial one. In recent years, the nature of conferences has changed considerably, moving from small University-based gatherings to delegations in their thousands at expensive hotels, complete with a programme of social events. Costs have soared. Which means that many early career researchers with miniscule budgets for academic travel are being excluded by default. This means that the delegations tend to be comprised of the Big Grant Guys: The professors and senior academics who attend every year to network with the same people and present work from the same labs. Which is all well and good, if it was interspersed with some new faces to learn from them who would bring their own fresh ideas. But if they can’t afford to go, does anything really move forwards?

Our EDI team in the Faculty of Medical Sciences has been working on an events Code of Practice (CoP) to address exactly these issues. We want to make sure that nobody  is excluded from attending an event, regardless of their background or disability. Where possible, all of our events and workshops are free to attend and we work closely with units across the faculty to find ways to better support early career researchers to attend external conferences. Our new CoP encourages event organisers to think carefully about sectors they are recruiting from to ensure as diverse a mix of speakers and delegates as possible. It also prompts organisers to consider aspects such as accessibility for disabilities, and providing a sensitive and comfortable environment for all.

We would encourage more conference organisers to consider the wider spectrum of potential delegates in future, to provide accessible and affordable access to what are incredibly useful forums for change and ideas…