As some of you may already know, I have been honored by a Democracy for America/Netroots Nation scholarship for this year’s convention. I was then fortunate enough to have Nurse Kelley (and Avila) go to bat for me to gather enough funds to cover my transportation and food for the trip. My family can attest to how unusual it is for me to get ready for travel early, but I’m already working through my packing and prep lists so that I can be semi-rested before my flight leaves on Wednesday afternoon.
Am I looking forward to this trip? Absolutely. Do I have a clear idea of what I can hope to accomplish there? Not yet—and that’s why I’m writing this diary in KosAbility today.
I am not a representative or a delegate to NN12 from KosAbility or from the Monday Night Cancer Club, my most central home base, since the process doesn’t work that way. On the other hand, my latest precipitous transition out of temporary able-bodiedness has brought home to me again how much tougher it is to get by in this society if one is disabled. Many of you know of this much better than I, and for much longer. I lost my job last year as a result of my diagnosis, which in turn made my whole family subject to dramatically higher health insurance costs (to say nothing about the medical bills themselves). [See Downtowner’s 2009 diary for a great, sardonic illustration of how that happens.] My new husband (as of July 2010) and I have never been financially secure, especially not before we got together. But we had one solid year before this hit—and now we are back to the paycheck-to-paycheck balancing act. Fortunately, my major disabling condition (so far) is fatigue. While that in itself does significantly limit my every-day activities, it could be much worse.
I am posting today in the hope of accomplishing multiple tasks. Please join me over the orange fleur-de-lis for details.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
First, I’d like to do a roll call of those in KosAbility who will be attending NN’12. Where will you be staying, and how set do you feel for the event? One of the major suggestions to come out of NN’10 was to have a buddy system set up in advance for people who might need some extra support to enjoy the event to the fullest. I have no idea whether that’s been implemented on a broad scale, since I didn’t go through the usual registration process. At this late date, it might be tough to pull things off. Still, better a few days ahead than on the spot!
Second, I’d like you to tell me about people to see and things to do related very broadly to KosAbility issues. There is not one panel, training, or special activity that has anything to do with health care, recovery, illness or disability, from what I can tell—and yet I know there will be plenty of people there who have strong interest in and commitments to these topics.
I do not have sufficient organizing or advocacy experience in disability rights, or in health care activism, to be able to say much while I’m at NN’12. I can, however, keep my senses attuned and my heart open to what is possible to learn onsite. Thus I’m also very keenly interested in your suggestions as to 1) what I should look for; 2) who I should try to meet; and 3) what would be good information and resources to bring back for all of us here.
Third, I’d like to know if we’ve moved the needle at all since NN’10 in terms of accessibility, safety, and comfort for people with disabilities. To prime the pump, let me reprise the dialogue that followed Nurse Kelley’s KosAbility Special diary from July 2010, in the wake of NN’10 in Las Vegas.
These are the issues and ideas that came up during Kelley's diary and/or in the comment thread:
Accessibility: Barrier-free rooms (bedrooms and bath/restrooms), but also clutter free meeting rooms; minimal carpet; ramps instead of stairs in every official meeting location; ASL interpreters or closed-captioning
Environmental safety: Smoke-free as the rule, not the exception; good, fresh water sources readily available throughout the facility
Convenience: Adequate travel time between events; rest areas (with food & water) for those who cannot repeatedly traverse the distance between lodgings and events
Event planning: Consult other organizations for ADA guidelines & suggestions for implementation; hire a disability coordinator for NN planning from day one; registration form to ask re special needs, with a plan for support if necessary; DKos fund for motorized wheelchairs for those who need them in this special circumstance
Cost: Keeping the event and locale affordable for people on low, fixed incomes with relentless medical and other expenses
On-site support: DKos aides for people without travel companions who might need some extra help (preferably, with advance orientation & matching)
Organizing and advocacy: phone/text tree for participants, to spread word quickly among KosAbility attendees; KosAbility caucus (h/t to exmearden for these two. I must admit, it is affecting to read exmearden’s comments about improving accessibility at NN’11. RIP, dear exme.)
I may have missed some major or minor points, and I may have organized them all somewhat capriciously, but please feel free to weigh in about any issue you please, including some that have not been explicitly mentioned.
I also do not know how NN ’11 in Minneapolis compares to NN’10 in terms of these make-or-break issues for people with disabilities. Again, please feel free to say what’s improved—and what still needs work.
One more important statement: If we do get good response here from people who are looking for support, the very first thing we'll need is others to help make that happen! Please keep in mind what you might be able to do, on or off site, whether right now, or for next year.
3:12 PM PT: 1) Per Raven Brooks in the comment thread below, the official contact person for anything that we might want to ask is Eric Thut, who can be reached at email@example.com
2) Assuming we'd like to have an informal KosAbility caucus, how does Saturday afternoon during the lunch break sound? Apparently there's room in the Exhibit Hall for such gatherings. If that sounds good to you-all, I'll make the necessary arrangements.
6:22 PM PT: NEW DAY AND TIME proposed for KosAbility Caucus: Friday noon to 1:30 (assuming we can figure out lunch).
Chacounne was gracious enough to reschedule our plans, so Friday lunch is now open for me. I was interested in Friday because it's earlier and gives us more time to implement our schemes!
Since I first floated Saturday, I am hoping that the switch to Friday will still be OK. Please let me know if one or the other is better for you--and we'll see what works out best.
I will continue to keep KosAbility folks posted, if the group admins permit, but I would also welcome personal Kosmails so we can exchange contact information. I have just updated my profile to include my email--but I will follow up with everyone who left information in the comment thread here tonight.