Friday, November 9, 2012

alemonlemoned:

supplements and pain meds; the chronic illness life…

Friday, September 21, 2012

Florida State Prioritizing Disability Awareness, Accessibility, but needs Improvement for People with Invisible/Chronic Disease, Disabilities

chroniccurve:

As a Florida State University student, I make a point to read FSU News fairly regularly. I opened up facebook yesterday and to my surprise (and delight), I saw this headline on my newsfeed: SGA Ramp Improves Campus Accessibility.

Let me tell you, there is very little that is accessible on FSU’s campus for disabled students. The first dorm I stayed in two years ago didn’t have a single ramp to entire the building. For someone who struggles to climb stairs or uses any kind of walking device or chair, obviously this is a problem. 

I am not the only one with problems; it is not anything new to the disabled minority how inaccessible and unaccommodating certain areas at Florida State have been up until this point. With very few handicapped spots, many of which are in both inconvenient spaces and almost constantly taken (there are so few that having a permit is often useless), it comes down to being ticketed for parking illegally or missing class time to find an appropriate spot. Or, perhaps not attending class at all. 

Seeing this article is a glimmer of hope for those of us who struggle to get across campus. According to FSU News, the SGA is working together with the Disability Student Union to lead a campus-wide initiative to improve accessibility at Florida State. Two points for you, SGA!

“The status quo for disabled students is not acceptable,” Porwoll said. “Disability awareness is a priority of the administration. Once we made our issue the campus’ issue, things started moving forward.”

The new initiative includes a $27,000 ramp to increase accessibility to the student union bus stop, but does not stop there. There is a new focus on a “wider comprehensive disability awareness campaign:”

“SGA feels that a major part of the campus has been left out,” Stokes said. “These [students] can’t even get from the bus stop to the Union and that’s something that most students do every single day without thinking twice about it […] 

We’re kicking off the campaign to raise disability awareness around campus by doing something that’s going to have a major impact on the daily lives of disabled students that most students aren’t even aware of,” Stokes said. “We’re fighting against complacency.”

With the support of the SGA, the Student Disability Resource Center has started planning and promoting Disability Awareness Week, scheduled for October 15th-19th.

While this is an incredible improvement worthy of much praise, there is still an incredible amount of work to be done. Both faculty and students alike think of disabled individuals as either being completely immobile, wheelchair-bound, and visibly disabled, or not at all. There is very little understanding of disability when it is invisible or in the form of a chronic disease or condition, or that disability does not end with struggling with mobility.

This is where the work needs to be done. Improving the campus is one part of the puzzle, but educating Florida State on what it means to be disabled needs to be a priority of the Disability Student Union, the Student Disability Resource Center, and the SGA’s new campaign. To help others understand that just because you cannot see it doesn’t mean it’s not there.


Only time will tell whether or not their new campaign will include this awareness, but FSU is certainly moving in the right direction.

Friday, July 13, 2012

Participants Needed! (please pass this along)

ladylikepunk:

I’m looking for 4 or 5 disabled people who identify as gay, lesbian, bi, queer or trans to participate in individual interviews about their experience of sexual and/or erotic pleasure, particularly in relation to how their identity as, and lived experience of being, a disabled person affects their experiences. The interviews will be the research for my MSc dissertation in Gender and Sexuality.

If you think this is something you’d like to do, please read on – please pass this on to your friends and acquaintances as well.

If you would like to participate – or would like to ask me any questions, please email me at eshepp01 [at ] mail.bbk.ac.uk or leave a comment in my ask box.

About You:

  • You must be 18 or over at the time of interview.
  • You must identify as disabled, with part/all of your impairment(s) affecting your mobility and/or range of movement or motor control; you can have multiple conditions (I include chronic illnesses and pain within disability).
  • You must be sexually active – either currently or in the past. It’s up to you how you define sexually active, but if your disability/impairment is acquired, you must have been sexually active since that point. I include solo sexual activity – i.e. masturbation – as sexually active, but if you don’t, that’s ok too.
  • You must identify as Queer, Lesbian, Gay, Bisexual, or Trans.
  • You’re happy to talk about having sex, sexual and erotic pleasure, and your disability.
  • You live in the UK.

The Interviews:

Face to face interviews will be conducted in a location of the your choosing, if both you and my own access requirements can be met (including the services of a BSL interpreter if necessary; I do not speak BSL to anywhere near an appropriate level). Unfortunately, I’m not able to travel far outside of London, but I will make every attempt to do so if possible. . Otherwise, interviews will be conducted via Skype, or through e-mail, depending on your preference.

The interviews will be recorded, and you will have the opportunity to review and revise the transcripts. I think the interviews will take an hour or thereabouts if done by Skype or in person, and email interviews would involve maybe five or six emails being exchanged. I am also happy to do the interview through instant messenger if you’d prefer.

I am happy for you to have your assistant present if you wish, or a translator if you prefer to speak BSL or a language other than English. While I’m not able to pay you to participate, I am happy to cover the costs of a translator.

The Questions:

The basic questions will be the same for all participants, however, the direction of our conversation will be guided by your answers and what you want to talk about; I might have other questions, depending on what you say. You do not have to answer any question you are uncomfortable with, and I will stop or pause the interview should you wish.

The interview data and transcripts will be made anonymous in the final dissertation, and any other publication resulting from this work.

The following questions will be the initial “starter” questions, although some may not be relevant to you.

  • Does your disability affect your current sexual/intimate relationship(s) or activities? How?
  • Does your disability affect forming new sexual relationships? How?
  • Do you think your impairment has changed how you approach or go about sexual activity? If you have always been disabled, or were disabled from childhood, do you think your disability affects your sexual activity?
  • Does your disability play a role in your sexuality or how you see yourself as a sexual person?
  • Has their impairment changed how you view and/or express your sexuality?

The following biographical information will be collected as well:

  • Age, Gender, Sexual Orientation, Ethnicity
  • Impairment/disability
  • Age of impairment occurring/developing
  • Do they have/need a carer or personal assistant, if yes, is that person(s) a relative/friend, or an employee?

Getting In Touch:

If you would like to participate – or would like to ask me any questions, please email me at eshepp01 [at ] mail.bbk.ac.uk or leave a comment in my ask box. I can also be reached on twitter, if that’s your thing.

I blog about the project here.

Monday, May 14, 2012

angimeows:

this is a short self-interview i did for the bigger fibromyalgia video :) i sound like a bimbo because i was exhausted, but… here you go!! support the fibromites!

Saturday, December 10, 2011 Tuesday, September 20, 2011