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…
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!
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…
How many of your colleagues do you know to have a disability? If asked this question, what mental check-lists do you go through? People you’ve seen using a wheelchair; somebody who has a guide-dog; perhaps that person who wears the coloured-glasses in lectures? But what about the ‘invisible’ disabilities that don’t have a physical badge? It’s relatively easy to be aware of and support the needs of people with clear physical disability. Either as a colleague, friend or employer, putting in a wheelchair ramp, offering to guide someone through a venue they haven’t been to before, or making sure you speak clearly and loudly, are not difficult things to do. And there’s little stigma in asking for them either. But what about the disabilities we can’t immediately see? The person who might have a panic attack if they hear a certain sound? Somebody who suffers excruciating pain holding a phone? The person who is over-whelmed by anxiety if there’s an odd number of windows in the room? Or the person who needs a private space to change a stoma?
10% of Americans are reported to have an invisible disability; that’s a lot of people. Perhaps the question might be, however, are these disabilities invisible or are they hidden? Hidden because of the social stigmas attached to admitting that you have a disorder such as OCD, bipolar or depression? Hidden because you think it won’t make a difference to your support or quality of life by ‘revealing’ them? Hidden because the disability that you’re suffering from isn’t in a diagnostic manual and doesn’t have any known biological cause?
This is not to give the impression that things are perfect for individuals with visible disabilities. The flip side of the coin might be that many people who have no choice but to ‘announce’ their disability might vehemently wish they could keep it hidden. Perhaps because they feel it makes people treat them differently or judge them in some way. Which is also an issue that needs rectifying.
There is a need to raise awareness of these types of disability, and reach a point where the same support and policies are in place as what exist for the more visible ones. Of course, it might be that many people choose not to disclose anything about their disability and would rather it stayed ‘invisible’. But that shouldn’t mean they can’t have access to resources and accommodations at work if they do wish to seek a bit more support. Nobody chooses to have a disability. Invisible or not, it should never be a definition of who somebody is.