collect information from people who would like disability accommodations

[https://id.mayfirst.org/malloryk]

There should be one of the following on the registration page:

If you need an accommodation to participate in the USSF every effort
will be made provide it. All USSF materials are available in
alternative formats upon request. Email requests to: USSFaccess@…
or call (248) 956-0354 no later than May 15, 2010. (This should be
minimally in a 14 PT sans serif font.)

The USSF will provide accommodations to people with disabilities or
speakers of other languages upon request. Please check what type of
accommodation you require and the appropriate person will be in
touch with you.

Blind or low vison _Deaf or hard of hearing Physical
Intellectual & Developmental Psychiatric Language _ Other

When attending the USSF, it is requested that you minimize the
scented personal products you use, to provide an accessible
gathering for people with multiple chemical sensitivities.

[http://josephlacey.myopenid.com/]

I'M ASSUMING THE OPTIONS ARE EITHER

If you need an accommodation to participate in the USSF every effort will be made provide it. All USSF materials are available in alternative formats upon request. Email requests to: USSFaccess@ or call (248) 956-0354 no later than May 15, 2010.

WITH A STYLE NOTE: This should be minimally in a 14 PT sans serif font.

OR

The USSF will provide accommodations to people with disabilities or speakers of other languages upon request. Please check what type of accommodation you require and the appropriate person will be in touch with you.

WITH A CHECKBOX MATRIX OF
Blind or low vison
Deaf or hard of hearing
Physical
Intellectual & Developmental
Psychiatric
Language
Other

ARE THERE PLANS IN PLACE FOR ALL THESE ACCOMMODATIONS? AND THUS DO WE NEED TO ALSO DISCUSS DISPLAYING THOSE DETAILS SOMEWHERE?

IS THE BELOW PARAGRAPH AN ADVISORY TO ALL REGISTRANTS? IF SO, WHERE IN THE REGISTRATION PROCESS IS THIS INTENDED TO BE ADDED?

When attending the USSF, it is requested that you minimize the scented personal products you use, to provide an accessible gathering for people with multiple chemical sensitivities.

[alfredo@…]

I'm in favor of the first option. The second option seems intrusive -- I don't think we should record in a database that someone has psychiatric issues. It would require more programming and I also haven't seen the plan to accommodate those needs and it should be approved by NPC before we start making it public. Finally, who is going to follow-up with these entries concretely because the worst thing you can do is have someone identify a very specific need that is central to their very lives and then not follow-up; that turns that person off permanently.

The "scented personal products" paragraph should probably be a paragraph on the website someplace and maybe on the program. Not in the reg form. The registration form is for registration, not information or rules. And I think it should be as minimal as possible, as I've often opined.

I'm also very queasy about the politics here. So many people, especially women...especially women of my generation won't leave the house without putting a little something on. I am not making this up. And it's very true, particularly, of women of color. I'm not saying it's good or we shouldn't combat this. We absolutely should and the rule itself is good. But the way it's written is so stark that I don't think it reflects our sensitivity to the enormous power of sexist aculturation in our society and it's impact on women's self-image and self-esteem.

But there's something else here and it's the most important issue.

These requests came in an email from someone but where were they discussed? And why wasn't ICT involved in the discussion?

As Jamie points out in an email to the registration WG (reflecting what I said at NPC) these requests can't be fulfilled before launch date. But the real point is should they be fulfilled and when did we discuss that?

Alfredo

[https://id.mayfirst.org/jamie]

FYI....

Here's the first message in the registration thread:

http://lists.mayfirst.org/pipermail/registration/2010-January/000094.html

Click next message to see the rest of them.

I'd really like to hear about how this data is going to be used before we ask people for it.

jamie

[https://id.mayfirst.org/malloryk]

I would agree that this be pushed back to a later milestone. It seems that as Disability and Access working group has just formed, that it won't be possible for the USSF organizers to preemptively ensure individual contact with each registrant that identifies as a disabled person in the above ways.

However, some such plan may very well come into existence, at which point we must communicate with previous and potential registrants.

In regards to the content of that plan and that communication, it's perfectly reasonable to organize towards keeping the social forum space free of oppressive mechanisms and every possible consideration should be ensured on a logistical level. But just as social forum as an open space can no more ensure political consciousness of participants around sexism or feminism, we can't ask them, in an official way, not to wear perfume.

[access@…]

The mechanism is in place to provide these accommodations and has been for some time. As a public event we do not have a choice not to provide accommodations. It is the law. If we offer the opportunity to request them and no one requests them, we don't have to provide any (very unlikely).

The assumption that people will not self-identify as having a psychiatric label is further evidence of the long standing stigma of mental illness many people are trying to combat. A person in the closet about their psychiatric label is not going to ask for an accommodation for it - only those who are out and proud will actually request an accommodation.

The address for requests is now Access@…

Not asking people to refrain from using scented products may fly in the face of the political consciousness for some, but it is a health issue for others. There is a large organized group of people in Metro Detroit who can rarely leave their homes due to the toxicity of the typical communal environment. Events with high disability consciousness will actually segregate people with strong scent to one area of the room (with "sniffers" at the door) to help accommodate the health issues of people with multiple chemical sensitivity issues. This is one group of people who are very politicized and would attend USSF it they thought it was a reasonably safe place for them.

Susan

[https://id.mayfirst.org/jamie]

Thanks Susan for the responses and really engaging and educating us on how this works and the politics behind your requests. I think I can speak for the whole ICT in saying what a big difference that makes to our work.

I think we're getting at the technical details of publicizing the availability of accommodations in #385 and #386.

However, I'm still interested in using this ticket to engage more fully in what it means to accommodate people with disabilities as a way of informing how we collect the information (the email address is a good start - but if we really get a large number of requests it could prove challenging to properly organize and respond to the requests if it's all handled by email).

I appreciated your (now obvious to me) statement about how people self-identifying as needing psychiatric accommodations aren't the ones who are trying to hide that identity. However, I'm wondering how publicly that extends.

The ICT's general strategy on data is that we start from the assumption that everything is public and then only make private information that really needs to be private (passwords, email addresses, credit card numbers, etc.).

So - what I'm getting at is - what if we had a system for people to request access accommodations in which one of the fields was: make my request public.

Then - anyone could peruse the list of accommodation requests that were public. Seems like that might help publicize the issues both for people seeking accommodations and USSF organizers who are unfamiliar to the issue.

Just a few more additional thoughts on this thread...

Can you give us a sense of what you think will be involved in providing accommodations for people with the various physical/psychiatric/ and other accommodation requests? Do you expect it to be labor intensive (need for general or specifically skilled volunteers) or expensive or in need of other resources? Since I'm new to this, I'm trying to get a sense of what the USSF needs to be prepared for.

And on the scent issue - that's an interesting collision of access, gender, race and class issues! I've never been to an event with sniffers at the door - I honestly can't imagine that happening without serious resistance (if not outright conflict), especially with a group that crosses gender, race, and class lines. I'm curious to hear more about your experiences with it. For example, a white person telling a black person they have to sit somewhere because of the way they smell has the potential to elicit some deep reactions relating to racism.

jamie

[access@…]

Jamie,

The disability justice committee has been working on trying to work through the accommodation challenge since October. We are prepared with/preparing all of the following. Let me go through them 1 by 1.

ASL (American Sign language interpreter. By law, any public event must either provide people the opportunity to request an interpreter, or it must be assumed one will be needed. So if we have 200 simultaneous workshops - 200 interpreters. The language access committee is working on getting volunteers and the disability justice committee is working towards fundraising.

Tactile interpreter (for people both deaf and blind). Same as above, but this group of people rarely travel independently, so they ordinarily have a personal assistant/interpreter.

Assistive listening (for people who are hard of hearing). I am trying to get some of these donated/lent. Most people who need this have their own. Those that don't - will be without health insurance.

Captioning - not likely to be requested, but could be the best bet for large group events. Some people prefer it for very legitimate reasons. Just because they request it, doesn't mean that specific accommodation must be provided.

Large print - probably the most common request. No big deal to provide. Much easier to have an adequate amount available when you have a baseline number of people who will want it.

Braille - not that commonly requested, but critical for those who do request it. Expensive and requires special machines. I do this and am looking for others to.

Sighted guide to get from one location to another. With an event as large as this, it is a safety concern. Most blind people find a person in the crowd to help them get from one place to the next - but as large as this is it might be difficult. We can get volunteers to do this for the few number who will request it.

Oral interpretr /Audio describer. This is needed by blind people for films. It can be done with technology or 1:1. We have 6 trained volunteers for this.

Wheelchair access - this should be there anyway, but it is good to have numbers.

Traveling with personal assistant. Also good to know numbers - and the additional unpaid participants.

A service animal --- so we can give them a map with"potty" sites.

Other ----- these are less common requests, but they happen
- place to refrigerate medication
- quiet room to get away from the crowd
- person to read materials out loud
- no fluorescent lights (autism, epilepsy)
- description of unusual behavior with hope for understanding (tourettes, OCD) - primarily a matter to have ready to communicate in the event of a problem - have had a discussion with safety about this

Think about being someplace where you were told you would be welcome and you confront a locked door. Other people get a key and open the door and go through. You don't get a key and people won't open the door for you. That's what it feels like.

Providing all this is a daunting task, but the sooner people request accommodations the easier it is to find people to provide them. If we tell a sign language interpreting agency we have 42 people who need asl interpreters they will be much more likely to help than if we say we have 4. They will expect us to pay for the needed interpreters. If we tell a company that makes Braille paper we have 15 blind people registered - they will be more likely to contribute paper. People who provide accommodation get asked to privide them for good causes all the time.

I've been doing this work for 10+ years. I know how to do it.

Susan

[access@…]

I have never ever seen anything about making my access accommodation public. I have no problem with it, but I think many people would be hesitant. I also think it is much easier not to make it public, because there are so many nuances to an accommodation. Anyone who requests an accommodation is going to have to be contacted to give get more specific information or to given them options or to tell them sorry they requested it to late (we've propose a May 3rd deadline)or just to give them the information about how to get their accommodation once they arrive.

As for sniffers at the door. This only happens that I know of at disability specific conferences. The type of scent they are looking for is chemical, not natural scent. It is also when it is extreme in nature. At this point in time, the request to refrain from scent is mostly an awareness activity. Most people with chemical sensitivities aren't ready to risk their health on a promise. The only people who really benefit are people like me who do suffer, but only a smidgen in comparison to a person with multiple chemical sensitivity disorder.

One of the most useful to the most number of people accommodations we probably won't have- or only at the large events is captioning/CART. This is where a person sits at a computer and types what is said and that is projected on a large screen. This helps people who cannot hear or hear well, who cannot understand English easily, have difficulty making eye contact, or just "listen' best through multiple senses.

I think I covered it....but this is a great conversation to have.
Susan

[access@…]

I posted the issue of disclosing accommodations request publicly on the disability justice website - and this was the first response:

Having accommodation requests open to the public is definitely a violation of privacy and not being a model of the intent of the ADA. This would leave the USSF open for a civil rights complaint to be filed. As a social justice forum respecting individuals should be a top priority.

Definitely a subcommittee needs to have both the accommodation requests and contact information. People not directly related to providing or figuring out the accommodation are only on an as needed to know basis.

National or logistics committee and the rest of the Disability Justice committee can be provided an update of total accommodations needed and costs/funds needed. As well they will need to know what workshops need what set up - I.e. Set up screen and extension cords for cart in rm xyz. They do not need to have anything specific to the person.

Educationally they can post the guide we give for presenters, they can report the general accommodations that were needed and provided, and they could even state that USSF would be interested in obtaining a release to interview the individual or share with the public how making appropriate accommodations is helpful and inclusive. It is not up to USSF to decide how or who discloses that is exactly part of our rights of self determination we have fought for decades!

Having both the ability to privately and confidentially request accommodations both online AND by form is needed and definitely contact info is needed and that also must be confidential.

I think I have typed what I can for now.

Thanks for your thoroughness and keeping us up to date Susan.
Carolyn

[https://id.mayfirst.org/jamie]

Thanks Susan and Carolyn for all the extra information. This really gives me a much better sense of what to expect and also a better idea of how the ICT and Access groups will need to be working together.

As for the requests, it sounds like using a private webform on the organize.ussf2010.org site is the way to go. With a webform, you can keep the entries private and you can export them all in a CSV file (which can be imported by a spreadsheet program).

jamie

[access@…]

Jamie,
Sounds like a plan! Can I use regular html form code or is there special form code I need to update myself on? I evidently need a special password to enter organize.ussf2010.org?
Susan

[access@…]

Jamie, I still need a password to get in.
Susan

[https://id.mayfirst.org/malloryk]

The password appears to taken care of as there is now text that reflects this on the website. Is there more that we need to work on here?

[access@…]

I don't know by whom. It was not me. If the information is being collected, I am not receiving it.

Susan

[https://id.mayfirst.org/malloryk]

#388 will be completed on the www.ussf2010.org which Susan is an editor. I'm just checking in about any other outstanding issues on this ticket?

[https://id.mayfirst.org/malloryk]

http://www.ussf2010.org/webform/access

Susan, how does this look?

[access@…]

Looks good to me! We may need to make an addition if we add housing to it, but for now it is fine.