Students & Stigma

The topic came up last night before group about students who come. Over the year+ time I have been attending group I'd say we've had students 4 or 5 times. I don't know why they always come in pairs. This is something I never have a problem with, in fact, I welcome it. Apparently, most of the few people there that night (attendance has been down this summer) have a HUGE problem with it.

Most people say it makes them feel self conscious, that they censor what they say, one person, who I've only seen in group maybe 3 times said he doesn't have a problem with them being there, but he'd leave.

The students generally come way before group and talk to a facilitator, get some literature that OOO Balto & OOO MD put out, and the facilitator gives a description of who we are and what we do. It's usually a pretty sizable conversation as the students have specific criteria of what they need to know. People don't seem to have a problem with that. They ALWAYS ask professionally/politely if they can stay, and I guess people feel uncomfortable saying no in their presence.

I however feel like it is a GREAT thing. I know from having to do things like this that using names and giving anything more then a very general overview of what went on during the meeting is strictly prohibited. Any student who broke anonymity/confidentiality would get in SERIOUS trouble. Click on the On Our Own tag below. I probably write more specifics then they do.

I feel like this is a great thing because it goes a long way in breaking down stigma. Students get to see that really we're just dealing with the same things they are, such as job searching which seems to be the most common topic of conversation these days. We're not "crazy." I feel like as human service workers they will be less likely to stigmatize the clients they work with and will be more likely to recommend services when they have a thorough understanding of how it works. I feel like allowing students to stay will make them better professionals. How is this in anyway a bad thing???

The person who said he would leave agrees with me that allowing students to stay does break down stigma, but he doesn't want to be the poster child stigma buster (I cannot remember how he said it). That makes me sad. This is something that takes no effort in this instance. I just can't wrap his comment around my mind.

On This the 20th Anniversary of the ADA, I Bring You THE SIGNING OF THE ADA

I personally don't think that George Bush the Older One was ever the foremost member of the disability rights community...

ADAPTers KICK ASS!

Found through Wheelie Catholic via Regator

Peer Support

The first thought that came to mind when I heard about today's swarm was to write about On Our Own. Although I don't know what to say. I thought I was going to write something more personal, but I'm going blank.

OOO has been offering peer run support groups in Baltimore City/County for almost 30 years, since 1981. Although not all of OOO's board of directors have diagnoses, 100% of the staff does. When we say peer support, we really mean peer support. Actually, I guess I will write something personal.

I never thought I'd be into a support group. I equated support groups with group therapy, and in fact I tried a 3 month stint of group therapy once and it didn't go well. But what I was doing last year wasn't working so I went. That was about 14 months ago now, and I am certainly a fixture of our center.

Peer support shouldn't replace regular individual therapy IMHO but therapy certainly works better with peer support. I joke about how codependent I am with my shrink, but the fact is I'm not anymore. Do you consider txting your shrink codependent? That'd be my definition. But I don't do this nearly as much (I mean, 'I can't remember what time my appt is' doesn't count as codependence), rarely email her (versus 30/week, really that's happened before) and don't call her. I can go a week between sessions now because I have plenty of people who validate that I am a worthwhile human being several times a week. I never had that before. In fact I was even seeing a psychologist who thought it was therapeutically appropriate (motivating) to make me feel like crap.

I can go into therapy now and say 'I was having this paranoid thought in my head over and over the other day, but then I heard Steve [name changed for confidentially] over and over telling me that was a cognitive distortion.' I couldn't have gotten to this place with just therapy or with friends who perpetually focused on my shortcomings. I couldn't have gotten to this place without Steve and Betty and Jane and Tom. I focus on my shortcomings enough, I don't need other people doing it as well.

What does any of this have to do with the intent of the swarm? I think that a sizable chunk of the TAB population doesn't believe that the disabled population is worthwhile. They don't see how sizable our collective power is and I thought I'd highlight one of the many ways this can be seen in action.

Love to all my friends in real life and in cyberspace. We really hold each other up. Even if we can't work or can't be "self-sufficient" (what the hell does that mean anyway?) we're still worthwhile despite what society says. We as people with disabilities are as important as any TAB. We can still change the world one person at a time. I see it everyday.

Supercripin it Up

It's funny that this week's AAPD video is Andy Imparato --my facebook friend, as well as everyone else's (he's friends with over 4,000 people), the President and CEO of AAPD, and a Maryland resident, so people I know know him-- because I've been wanting to write a post about him for a week or 2.

I don't often look up to people, but I look up to Andy. I look up to Andy simply because he is bipolar and a giant well known activist. Although I identify as a person with a physical disability first (I mean I was born with one, so...), my bipolar is what is keeping me from doing what I want to do in life, and Andy is doing, and has been doing, what I want to do. That little box below my facebook photo says

I want to be a freedom fighter when I grow up

Andy is a freedom fighter, and it just so happens that Andy is bipolar. My mom once sarcastically asked if you have to go to college to be a freedom fighter, and the answer is absolutely not, although it most certainly helps.

Andy got through it. Andy not only got through it, Andy is a lawyer. On those days when I think I just cannot get through it, on those days I think it's impossible, on some of those days I think about Andy. I don't know any of his specifics, but I don't have to. He's an activist, he's bipolar, he's open about it and identifies with having a disability just the same as a paraplegic, or someone with down syndrome. I don't know of anyone else who fits those qualifications (if you know someone else, please comment). So Andy isn't exactly like me. Andy's not in a chair, but so what. It's funny how I identify most with my physical disability, but I identify most with someone with my other disability.

I know I shouldn't place people on a pedestal, people are people, but I can't help it. Is that wrong? Is it wrong that Andy gives me hope for myself? I don't like when we're supercriped, and yet here I go supercripin someone...

Some Thoughts on Eli the Bipolar Bear

After receiving the book a few weeks ago and showing it to some of my friends (some bipolar and some with other psyc diagnoses) & my therapist I thought I would share our comments.

1. I had a problem with the fact that Eli's psychologist is the "Wise Old Bear," a male, then one of my male friends made a quick comment on feminism, but I can't help it, I read feminist blogs and I've had experiences with so many different shrinks over the last 2 decades (9, 3 male and 6 female, ranging in age from their 20s to their 60s) that I have a very strong personal opinion on what I like. So way to perpetuate a sterotype...
2. AC said she didn't mind the "Wise Old Bear" thing so much, but Eli's medication is termed "special tasty little fish," which hit me as cute at first, he's a polar bear and there's this Rx label on the bucket of fish, but I can see what she's saying about how we present the idea of medication to little children.
3. CM commented on the fact that at the end of the book, it was presented as almost like after just a few weeks Eli was perfectly fine, and the world just does not work like that. To paraphrase what another friend once said, the road to remission is 2 steps forward and 1 step back.
   
4. My therapist thinks that the book is GREAT and that the pictures are GREAT and are what make the book. They are what will capture kids' attention. She also brought up something I had not thought of which is that kids' are more receptive of cute furry animals as opposed to if Eli were a human boy. They find books about kids going through stuff more boring. Really???
5. We both wonder why I had to get it interlibrary loaned from all the way in Norfolk Va and why there aren't more libraries that carry such an important book. Interlibrary loan ships from the closest library and Norfolk is hours away.
6. Lastly I think it's cool that the author of the book has a degree in Family & Child Development. So cool that I even shared it with my class. When you discuss careers that family studies majors are qualified for after graduation, no one ever mentions children's book author.

The Season for Death???

There are a lot of older ladies and gents that live in my building. So many, that people have wondered why I chose to live in a retirement community. The truth is though that there is a core group of people 70+ that linger in the lobby and that is who you see. Not everyone else coming and going.

Last night I saw the 4th obituary of the summer posted in the lobby. Management writes their apt # in marker at the top. I have lived here a year and have not seen any previous obits that I can recall. Not that I knew any of those people (and they were old, none of them were sudden), but this coupled with Susan's post, and even Jenni's post about her cat, as well as a conversation I had yesterday afternoon with a friend about another friend who had passed several months ago, just has me in a funk.

What is it with all of this death? I'm not spiritual, not into god, but I can't help but wonder what this all means...

"President Obama is a Supporter of 'Independent Living'"

From April 2009.

"President Obama was [emphasis mine] a supporter of the community choice act... right now... president Obama remains committed to independent living..."

How very politically sly. It makes it seem as though he supports the CCA still, but yet says was instead of is. How can you support IL w/o supporting the CCA? What a cleaver turn of phrase... WTF man? Be straight w/us...

2010 Maryland Gubernational Candidates Disability Issues Forum

I will probably repost, but I didn't want this to go to the back of my email inbox and forgotten about

Greetings from Maryland Disabilities Forum:

The Maryland Disabilities Forum is proud to announce that the 2010 Gubernatorial Candidates Forum on Disability Issues will be held on October 11, 2010 at the BWI Marriott Hotel from 2 p.m. to 4 p.m.

The leading 2010 Gubernatorial Candidates – Governor Martin O’Malley and former Governor Bob Ehrlich have both been invited to participate in the event. Candidates will be asked to address their respective platforms on disability issues, and will also take questions from the audience.

We are asking you as individuals with disabilities, family members and those who care for and about people with disabilities, advocates, community organizations, agencies, and businesses to circulate this notice to anyone who would be interested in attending the event. Attached to this email is a flyer that can be printed and posted, or sent via email with a live link to our website’s pre-registration page. The Gubernatorial Candidates Forum on Disability Issues is a free event, and though it is not required, pre-registration is preferable: http://www.mddforum.org/2010forumregistration.html.

Providing a platform for Marylanders with disabilities to hear from gubernatorial candidates about the policies that affect their lives serves to keep a growing voting population well informed and active in the political process. We encourage all interested parties to attend and to get actively involved in determining who will serve as Maryland’s next Governor.

Don’t forget to register to vote, follow our links below for Voter Registration and Voting Information:

Voter Applications must be postmarked by August 24, 2010 to vote in the Primary Election on September 14th.

Voter Applications must be postmarked by October 12, 2010 to vote in the General Election on November 2nd.

For Voter Application Form Visit: http://www.elections.state.md.us/voter_registration/application.html.

For More Information About Voting Visit: http://www.votesmart.org/voter_registration_resources.php?state_id=MD

An Experience

I've been going to the mall an awful lot lately. I live at the mall, you could say, I'm that close, so it's not hard to get to, and I'm looking for a cardigan to go with a dress I got for a wedding (I don't like blasting air conditioning) which you wouldn't think is as hard as it's been to find, a white or off white somewhat fitted cardigan, but it is.

Over the years I've lived here, as I've progressively been using my powerchair more and more, I've of course noticed children staring at me more and more. Not to say that they don't stare at me when I'm walking, not to say that they haven't been staring at me my whole life, or that adults can't be rude too. One time I was in Target with my chair and this kid turned his head around and kept his gaze on me the entire time he was walking in another direction with his dad, until I was out of sight.

When this happens with kids, it's usually from a distance, and so my standard response is to smile and wave and move on. When they're a bit closer I always wish I was able to say something educational, but I'm not good at being put on the spot. I can do a presentation to 100+ people just fine, but put me face to face with one person and I freeze up.

Such was the case at the mall this past weekend when a young girl walked up to me, put her hand on my joystick box (thankfully not the actual joystick, there would have been an accident) locked her gaze on me and asked me "Why do you need this? Why are you using a wheelchair?"

The quick and easy answer is "I can't walk," but that is not true, and if I'm going to educate, I'm going to educate that some people who own wheelchairs have them to use just sometimes. So then what do I say? "I can't walk home the 3 blocks, which includes up the parking garage ramp, especially if I am holding bags of stuff." I mean maybe with my crutches, but then what do I do with my stuff? That answer just didn't seem right in the moment.

What did I end up doing? I went mute, said absolutely nothing, and turned towards the item I was interested in looking at. Although I did not feel good ignoring the kid. So what would you do?

The Proloquo2go Creator ABC Interview

So I was surfing around the blogsphere, reading blogs I've never read before, clicked on a commenter, looked at her blog, clicked on something she linked to, and found a video of a very young girl with CP learning how to navigate her IPad. From there looking at the related videos on the side of the screen, I found the ABC interview. If you use my search on the top of my right sidebar (not the one all the way on the tip top left) you can see there are several posts about CP kids trying out Ipads/pods (from before IPad), there is even another one I found through Alltop, there are some articles about autistic kids and proloquo2go, but these are the first videos I've seen. I also thought this video was cool because it's the creator. Anyone have any thoughts on this device? Please share.

AAPD Talks to John Kemp (#8)

Quote From My Office

Some women in the office have the most amusing/interesting lunch time conversations and this is from a few weeks ago so I have to paraphrase, but here's the gist:

One of the things they do is read the local free city paper and comment. This is not something I ever read, but apparently there is a space where people can write in and rant about whatever. In that issue there was a "rant" where someone went off on men who don't get up for senior citizens and pregnant ladies when riding on a crowded bus.

So right then and there this person went off on her own rant on how that is not a rant. You can't rant about that because what if this person can't stand. What if they have an invisible disability and can't stand? [to interject, I have a friend experiencing foot issues due to diabetes, and I don't figure he can stand anymore, for example] Should they have to announce it?

I had a WOW moment in my head. I just found it so refreshing that people actually think like this in the world. And feel strongly about this. Someone who doesn't look like she has a disability (I'm wondering if she does). Cuz I didn't even have this thought when she was reading it.

So what do you think? Justified rant or not?

A Therapeutic Riding Place Near Me

Someone in my class is currently interning at ROSES and somehow I got to this article (click to read it) from an office wide email at my internship and not from her. From what I've heard all summer ROSES is a GREAT place and I got pangs watching this video knowing that I cannot go riding because paratransit does not go there. Joan just sounds so AWESOME from what the intern says. She is so dedicated she doesn't even pay herself!

Action Alert from NCIL

TAKE ACTION NOW TO PROTECT MEDICAID AND HOME AND COMMUNITY BASED SERVICES!

ACT NOW: Urge your Senators to support the extension of the FMAP increase

Background

Recently, Congress tried to pass a revised jobs bill (H.R. 4213) that would bring some much-needed relief to states by extending the FMAP (Federal Medical Assistance Percentage). Without the extension of the Medicaid FMAP increase to states, many programs and services for people with disabilities will be in further jeopardy because many states are relying heavily on these funds. Since Congress did NOT pass an extension of the increase in the federal medical assistance percentage, many states may be forced to cut the funding from their programs like home and community based services prohibiting people with disabilities from living independently within the community.

Since most states have already budgeted the FMAP Extension into their FY 2011 Budgets and start their 2011 fiscal years this week, states are in desperate need of funding to keep their programs running.

IL Advocates must make their voices heard to get the FMAP extension passed very soon.

Take Action

Please call your Senators' district offices during the Independence Day recess (July 2-12) and tell them to support the FMAP increase extension.

Call now and urge your Senator for a six-month Medicaid FMAP extension!

Talking Points

* May I please speak to the staff person who covers health?

* I am calling to urge Senator _________________ to do everything possible to ensure that a Medicaid FMAP extension is passed.

* People with disabilities depend on Medicaid. Without an extension of the Medicaid FMAP increase, people with disabilities will lose vital services like home and community based services that allow people with disabilities to live independently.

Another Repost--10 Questions

I was talking with a friend Wednesday night, someone who has termed herself a "neophyte [disability] advocate" and she was very clear that she would not change all the negative things that have happened in her life because they have shaped who she is, and quite frankly, the world would be boring. I then remembered I had this post from 2.5 years ago, written just at the start of this blog and just after BP diagnosis. I told her that a friend with a CP and some psychiatric diagnosis called after reading this and chewed me out. HOW COULD I BE OK WITH HAVING CP, she basically said? She'd get rid of hers in a second and griped about all the ways it is so horrible. The good this has lead to for me outweighs the bad.

I've decided to repost because this isn't anything that ever comes up on linked within (those boxes at the bottom of all the posts). It is interesting to see how much my insecurities and views about my world have changed over 2.5 years. I would change some answers now, although I am choosing to post how it was originally written.

It's 11:45 and I'm laying in bed. I just took a sleeping pill and my brain needs something to occupy it while I'm waiting for it to work, so I thought I would post another entry. I have a rant to post tomorrow, but I need something that doesn't take too much thought. Here are some disability related questions & answers:

1a. If I could take a pill tomorrow and not have CP anymore, would I do it?

First of all, I couldn't in reality because I've had too many muscles/tendons/etc moved and you can't move them back. Putting that aside, I still wouldn't do it. I've spent 22 years with CP and 0 years without CP. It's all I know and I don't think I would know what to do with myself if I suddenly didn't have CP.

1b. If I could wake up tomorrow and not be bipolar...

I would be ecstatic. I would have a GPA somewhere around 3.5 and I wouldn't feel like people have to "deal with me" because I would act 22 all the time instead of on somewhat rare occasions.

2a. What is the worst part about having a disability?

Not being able to drive.

2b. What is the best part about having a disability?

Not having to wait on long lines (JK); being at least a bit more grounded--who's wearing what isn't the most important thing in the world.

3a. What do I wish I could do?

Well, besides drive, Have the confidence to go on a date... guys are attracted to confident girls after all.

3b. What have I done that I never thought I could do?

Walked up "killer hill" at my camp, ran a mile in under 15 mins, finally made true friends, planed a workshop for 150 people, I'm sure there are more.

4. What could I do without?

The problems with my back. I don't know anyone with CP who doesn't have back problems.

5a. What do I want able bodied people to know?

A lot of times if you make something "easier" for me, it will also make things easier for everybody else as well. An example is curb cuts, they are also convenient for bikers and parents with babies in strollers.

5b. What do I want human service providers (doctors, social workers, etc.) to know?

They need to listen. REALLY LISTEN. Sometimes "I think something is going on in my head" isn't the cry of a hypochondriac or someone looking for an excuse. If they stopped and listened, there really was something going on in my head all along.

6. If I could tell my 11 year old self something...

I would tell her that life isn't gong to get easier from here, it's going to get harder, MUCH HARDER so she should start praticeing asking for help now, so that when she REALLY needs help she'll know how to take it.

Well that's 10 questions and I'm starting to get a bit drowsy (YAY). If anyone comes up with some more, maybe I'll do this again soon.

Animated Video

I found this video a few weeks ago on this blog by randomly clicking through blogrolls. Here is the description:

Buddy has depression. It’s not debilitating, but serious enough that he has no joy in life. He’s not so much a black dog; more a brown dog if you like.

Buddy has read some books that have helped him with his depression, but the one called “Taming the Black Dog” falls on him, compounding his woes.

He gets on his computer and uses the Optimism software. (Ahem, where are the screen images) The app helps and he’s feeling more positive about overcoming depression. For some reason he is now reading Napolean Hill – what’s that about, Buddy? – and climbs into his box with a little more hope than before.

I'm not advocating/advertising this software, as I don't believe in being this obsessive, but I do appreciate the animation as I grew up with my brother (my own shameless plug), and really I'm just trying to get how you come to that conclusion necessarily. It could be, perhaps, that Buddy the dog was looking to see if there was any recreational reading, hurt his head and was looking for info on concussion symptoms...

Empowering PWDs Blogswarm

I just found out about this event from Glenda and have copied the info below. Yes, I will be writing. I know... what a shocker. I hope some of you join as well. Here, copied from a previous post, is my definition of what a blogswarm is:

A blogswarm is like a blog carnival on a larger scale, where as many as hundreds of bloggers (as opposed to 10s like in a carnival) commit to blogging on a certain topic on a certain day, usually in hopes of gaining mainstream media attention or just greater awareness and understanding of an important topics. Here is the Anti-telethon Blogswarm (Kara, please update one of your blogs), DUH City & of course the ever popular BADD 2009.

Hello Friend,

I just wanted to take a second and let you know about an upcoming BloggersUnite event, People First: Empowering People with Disabilities. It is taking place on July 24, 2010 and the goal of this event is to raise awareness about the challenges that face people with disabilities every day and how we can help eliminate these challenges.

By sharing stories of how you, a friend, a colleague, or maybe a family member have dealt with the challenges of living with a disability, we can raise awareness about this issue and bring down some of the barriers to equal accessibility and participation that exist today for people with disabilities.

If you don’t have a personal story to share, you can still help! Write about an organization that provides support to people with disabilities or that is helping to provide equal access. Let you readers know some facts about the number of people living with disabilities, the challenges they face, and how each of us can work towards creating a society that provides equal access to everyone regardless of our physical or mental abilities.

Whatever you choose to write about, we’d be thrilled to have you write a post as part of this event. Read more information about the event.

Thanks for reading and have a great day,

Jason Teitelman

AAPD Countdown to the ADA Video #7

I don't know what's happened to TASH (If you click you'll see there's no new videos)

Apologies for my Lateness: A Survey

I was just cleaning out my inbox and found a FB message from Beth of media dis&dat about her survey (which I pretested) that went live 2 weeks ago. OOOPS! Well, I am promoting it now...

GO TAKE IT. NOW.

There. Promoted. I feel better.

Here's a little blurbish:

Hi there. A colleague and I have created a survey about news and entertainment media so disability advocates can give their opinions about this important issue. I hope people with disabilities in general and those from disability organizations will take the survey. Can you take the survey and then send it to your contacts? Thanks!

Please forward the survey widely.

Tell everyone that we are happy to provide the survey results to anyone who wants them.

Here is the survey link: http://www.surveymonkey.com/s/CQ8BLFG

4th of July Repost

We hold these truths to be self-evident: That all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness... ~The US Declaration of Independance

On this 4th of July when you are reflecting on all of the freedoms you have as a citizen of the USA, remember also that there are MANY people that are stripped of their rights every day, imprisioned against their will without ever comitting a single crime. All men, means all men (and women too of course).

All photos were taken from adapt.org and are from the spring 2009 national action.

Someone I know is in this picture. From the Fun Run 4/26/09

A very patriotic picture. From the Fun Run 4/26/09

Banner says:

"COMMUNITY CHOICE ACT OUR HOMES NOT NURSING HOMES CHANGE AMERICA NEEDS!"

all in yellow and CCA orange w/the free our people dude on each side. From 4/27/09

Teddy's sign says "COMMUNITY CHOICE ACT NOW!" in CCA orange. Outside the White House on 4/27/09

A sea of CCA orange crawling up the capitol steps. Who was the orange color leader? From 4/28/09

The Paul Reiser Show

Video straight from NBC. Thanks again Beth for the great blog and the heads up (original article here)! I'm not so sure I'd bother to watch the show if it wasn't that the kid in the chair really IS a kid who owns his own set of wheels (the chair on set is not his chair, his chair is WAY cooler, check out the pics gallery that goes with the article) But now of course I am going to be sure to watch. Anyone know an airdate?

AAPD Countdown to the ADA Video #6