Ricky Writes Letters: Advocacy is Inaccessible for Some People With Disabilities

[Shirt reads: "I don't mind the able-bodied, so long as they act disabled in public." Shirt is from NoPity]

Today’s Guest Hoyden is Ricky Buchanan of Not Done Living. Ricky’s Livejournal is here. She also runs ATMac, an information site for Macintosh assistive technology, and NoPity Shirts. Thanks, Ricky!

Ricky had phoned DARU about a disability-related legal seminar, to explain why she couldn’t attend and request information. Sharon became interested in the issue of people with a disability who are bedridden and/or housebound after Ricky hopped off her soapbox, and she invited Ricky to email her with information so she could raise it at the next VDAN (Victorian Disability Advocacy Network) meeting.

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Dear Sharon,

Further to our phone conversation today, I’d like you to bring up the issue of access for those who are bedridden/housebound at the next VDAN meeting. This is an issue which urgently needs systematic activism at all levels. You have my permission to forward this email to any person or group who you think could benefit from reading it.

People with disabilities who are bedridden and housebound are totally off the disability “awareness radar”. By “bedridden and housebound”, I mean people who, due to a disability, are totally unable to travel outside their homes except for medical needs to be met. There is, as with all things, a complete continuum – from those completely unable to be moved for medical reasons, those for whom travel is extremely difficult and tiring (a ventilated quadriplegic may be in this situation), those for whom travel is logistically difficult because of their living/care arrangements, and so on.

My own situation is that issues with blood pressure prevent me sitting up for more than 2 minutes, so I can’t use a wheelchair. My body also reacts with severe medical symptoms when homeostasis is challenged – this includes exposure to loud sound, daylight, change in temperature or weather, vibrations (such as a moving vehicle), change in position, etc. This means that non-wheelchair movement is extremely limited and, in practice, I spend 24 hours a day in my hospital bed. The only time I travel is when I’m taken to hospital by ambulance in a medical emergency or for unavoidable tests.

I am an extreme case, but there are many people in Melbourne who are bedridden or housebound for disability related reasons, including physical disability and those with mental illness.

When I speak of providing access to this group, I am speaking of access to information. The event I phoned Sharon about today was a DARU workshop on the topic of disability related legislation. As a person with a disability and somebody who is becoming more advocacy-literate, I am very interested in this information. The email announcement I received via PDCA provided information about several rural locations that the workshop would also be held at, noted the free nature of the event, and specifically mentioned that special dietary requirements, interpreters, attendant care support and alternative format information would be provided, and that people could phone to enquire about other support requirements (which I did). I also know from experience that the Melbourne location at least (Ross House) is wheelchair-friendly. This is an impressive list of accommodations to provide, as to be expected for a disability-related event hosted by a disability-related group. And yet there is no mention of access to this information for those who can’t attend no matter how accommodating DARU is.

I think that one reason accommodations for non-attenders is not even thought about is that it is, by its very nature, an invisible problem. You don’t see those people unable to even get close to the venue. We can’t picket for access… and most people whose disability/health situation is severe enough that they are housebound are often in that situation temporarily (as in the case of terminal illness), have other problems which inhibit communication, or simply have so many problems that just getting through the day is more than enough to cope with. Trying to educate the disability sector to the fact there’s an entire population out here that they aren’t catering to is a big task!

Another fear I forsee is that providing access for those who can’t attend will be seen as a “shortcut” to avoiding having to provide other types of access. This could be summed up by “The venue isn’t wheelchair accessible and we can’t afford interpreters, but those people can just use the remote access anyway – it’s easier for us”. I agree 100% that this is a danger which must be guarded against, but this is not an excuse sufficient to deny access to information for those of us who are bedridden/housebound and want to participate in the community.

What constitutes “access” to an event one cannot attend? There is a huge range of answers, depending on the format of the event, but some possibilities include:

• Video recording of the event to be distributed at a later date.
• Audio recording of the event to be distributed at a later date.
• Video/audio broadcasting of the event in real time or near-real time (can be done via internet).
• Video/audio confrencing of the event so people not physically there can respond as well as listen (can be done via internet).
• Providing the standard information packets provided to attendees.
• Providing a transcript of all or part of the event.

Most situations can be amply served with a combination of some of the above methods. For example, providing the standard information packet covering information given in speech format, plus an audio recording or a transcript of the question-and-answer section of an event. All of the video/audio options can now be done very simply with minimally expensive equipment and distributed over a regular home internet connection with a little technical know-how – this does not have to be a hugely expensive exercise.

And as with virtually all disability accomodations, providing access of some kind to those who are bedridden and housebound also has many “knock-on” benefits. This access – subject to the caveat above about not being a universal “get out of jail free” access card – could be used for those who live in rural and remote areas, for those with carer duties, for those who happen to have the flu the week of the event, for those who can’t find childcare or reorganize their PCA coverage to manage to attend an event. Many people who are not bedridden or housebound could be helped by providing access to this group.

I have been housebound or bedridden for a decade, more or less. I am interested in becoming more active as a systemic advocate in this area but, especially in the absence of an umbrella group for this topic, I don’t know where to start. I would be happy to correspond by phone [redacted] or email (ricky at notdoneliving dot net) with anybody on this topic.

Yours Sincerely,
Ricky Buchanan
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Ricky Buchanan http://notdoneliving.net/