I would say that in general it is challenging to ask for accommodation because people automatically assume I am being “difficult” or “entitled” to something that others are not privy to. - From the CCHA Spotlight on Invisible Disabilities Report
For speakers and attendees alike, a lack of adequate accessibility at events can be at best an inconvenience and, at worst, an impossibility.
But, what about those who don’t appear to need help navigating and negotiating the conference? What happens when you walk into the room and everyone thinks you’re fine?
Invisible disabilities at events are something that organisers aren’t always as well-prepared for, despite the prevalence of these conditions throughout our communities.
The Invisible Disabilities Association and its members have vast experience at different types of events, ranging from galas to symposiums to week-long awareness campaigns. I spoke with Deb Hileman, one of the organisation's board members, to garner some insight on the subject in the hopes of enlightening event organisers eager to prepare for future needs.
How prevalent are invisible disabilities?
“Often people think the term ‘disability’ only refers to people using a wheelchair or walker. On the contrary, the 1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker (Americans with Disabilities 94-95). In other words, 74% of Americans who live with a severe disability do not use such devices.
Therefore, a disability cannot be determined solely on whether or not a person uses assistive equipment.”
And how then do we define what an invisible disability is?
“The term we define as invisible disability refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations, and vary from person to person.
Also, someone who has a visible impairment or uses an assistive device such as a wheelchair, walker or cane can also have and invisible disability or invisible disabilities.
We do not maintain a list of specific illnesses and diagnosis’s that are considered invisible disabilities. There are thousands of illnesses, disorders, diseases, dysfunctions, birth defects, impairments and injuries that can be debilitating. Therefore, all conditions that are debilitating are included when we talk about invisible disabilities. However, our focus is not to attempt to provide a vast amount of information about thousands of specific conditions (there are plenty of websites that do that).”
How can conference organisers work towards making their events easier for people with invisible disabilities?
“It really depends on the conference! But generally speaking, consider the length of sessions and breaks. Make sure that ample breaks are built into the schedule so that people have time to rest.
Find ways to share content online. Many of those who suffer from invisible illness and disability are not able to attend conference. They may be home-bound and simply unable to attend, especially if cross-country travel is involved. Develop ways that these possible participants can join the conference through live webcasting or other online content.”
What’s the best way to reach out to attendees to ask about the needs that might come with their disabilities?
“There is no one most sensitive way to do this. What may be appropriate to one person may seem insensitive to another. It is important, however, to state your intention to be inclusive and simply ask at the time of registration if an individual needs any special accommodation to attend, just as you might inquire about special dietary requirements.”
(That said if, as an organiser, you’re cautious about what not to do, exploring testimonials from those with invisible disabilities is the most recommendable research to start with.)
What's the bottom line?
"One of the most important steps in helping those with invisible disabilities is belief.”
Many people with invisible disabilities have spoken out about their frustration at being overlooked, ignored or dismissed when requesting accomodations at events or in the workplace.
Believing those who may not seem to have a disability is the first step. Beyond that, there are many, many, many resources available to make the preparation process more effective. The IDA itself has recently produced a book on the subject of invisible disabilitites and, should you want more information on the subject, you can pick up a copy on their website.