Inclusion is invisible when it is something you have always had. If you are someone who can walk, then you may never need to think about ramps. If you have never experienced chronic pain or fatigue, then you might not notice that public seating has quietly disappeared in recent years.
But for those of us who live with chronic illness and disability, inclusion is an ongoing process that goes far beyond architectural accessibility, and touches on all areas of personal and professional life.
“For me, chronic illness and disability inclusion is not a static thing, because access for one does not mean access for all,” said poet and disability activist, Hannah Hodgson, “Wheelchair seating does not guarantee there will be an accessible toilet available, for instance, and we should not expect people to have to explain their access needs in order for those needs to be met.” For Hannah, access which is offered as an afterthought, or only made available to few, is a long way from equality.
“Access to me looks like spontaneity. Particularly in my line of work, we fall into the trap of being so grateful for the fact that [some events] are online, we forget about the people who cannot be there either physically or digitally because they do not have the technology or the money.”
“The lack of access to technology is an increasing issue for disability rights across all disciplines right now.”
The importance of utilising technology as a tool to include people is something that is also echoed by Catherine Hale, the founder and director of Chronic Illness Inclusion (CII).
“When we set up CII, we grappled with the question of what inclusion could look like when, even with mobility aids, personal assistance, and accessible transport systems, someone still cannot get out of bed.
“Increasingly, CII is about taking part in society from our homes and beds through digital connection. Thanks to the technology that allows us to access so much via video, our exclusion in the worlds of work and culture are no longer inevitable, but a matter of policy choice.”
The mixed legacy of the pandemic:
It is hard to express just how much the world changed in the spring of 2020. Digital socialising and work opportunities suddenly became the norm, which meant that many people who were previously left out now had the chance to participate.
“The pandemic was a total game-changer for me and many others with chronic illness because everything went online and became accessible from home,” said Catherine. “It meant that for the first time in my working life, I could network and connect with people on a level playing field and not feel excluded. I cannot overstate the impact which that has had on my confidence and the opportunities it opened up.”
Similarly, Hannah highlighted that the move towards digital over the last two years has helped her enormously: “The internet has allowed me to both perform and be part of an audience at literary festivals. Pre-Covid, my book tours would have taken me all over the country and made my condition worsen faster.
“Being able to teach, learn, perform and network online means that I don’t have to incur the many, many costs associated with being a disabled woman “on tour’.”
However, while many people benefited from digital and hybrid events during lockdown, it was not long before these measures were taken away during the “return to normal”. “Now that organisations know I’m still shielding, they do not even approach me or try to offer hybrid solutions,” remarked Hannah.
Hannah and Catherine both suggest that too often full inclusion still relies on the goodwill of event organisers and individuals, rather than being something that is expected as a matter of equity. Yet despite this, many organisations are beginning to incorporate diverse access needs into their processes.
“I did a talk last Friday, and the organisation could not have been more accommodating,” said disability blogger Chloe Tear. “I had an assigned ‘helper’ who had learnt how to guide a visually impaired person. They supplied a quiet space where I could rest and lay down if I needed to. They let me see the stage beforehand and check the lighting was okay with my light sensitivity. “They valued my input, wanted to hear what I had to say, and did everything they could to make sure it was accessible and that I felt comfortable.”
Ultimately, the pandemic has shone a light onto how quickly inclusive practices can be applied, but also how quickly they can fall by the wayside again. Until equal access is seen as a standard part of life, rather than as a special measure, this will continue to be the case.
The connectivity of the modern world is something that continues to drive positive change.
“In the literary space, the organisations that are now streaming are doing something which they used to refuse,” Hannah highlighted, “Whether this is because they have realised the different income streams that an online audience can bring in, or because there is a genuine commitment to inclusivity, they are becoming more accessible. That is something and huge progress in my opinion.”
Chloe agreed: “I think we have to be optimistic about the future. It is the only way we have a chance of changing things. It should not be down to the disabled community to change public perceptions, but this is where we are, and the rise of social media has connected disabled people to each other like never before.
“I believe it is this connection that will improve inclusion, because it no longer feels like an individual battle, but a collective endeavour instead.”
Increasingly, chronic illness inclusion is expanding thanks to new technology, and while there may not be a fully inclusive world just around the corner, a more equitable society is within reach. The pandemic has shown us that the infrastructure for increasing accessibility already exists, and it is up to society as a whole to ensure that it does not fade away.