It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Thursday, May 28, 2009

From Around the Blogsphere

I regret that I haven't been posting more news articles as of late. I got to this latest one from Schulyer's Blog. iPhone Applications Can Help the Autistic. From USA Today. And from Tiffiny I got to New Manual Wheelchair Propulsion System & Clever On/Off Battery Switch Prevents Vans, Cars (You Name it) From Dying. Have a good night everyone.


Thankful Thursday

[image description: cartoon image of a bride & groom w/a heart]

This week I am thankful because...

  • my parents are getting married Sunday.
  • I got my hair cut today for the first time in 5 months and colored for the first time in 11 months and now I look like a human being again.
  • I got into ADAPT Youth Summit after all and CDRC is paying my plane ticket.
  • I knew exactly where I needed to go to find socks for my dress for the wedding.
  • my mom hasn't killed me since I've been home, but rather has thanked me twice since I have been down here.
  • I have this free time to read blogs at the moment. 3 people in a house getting ready for a wedding w/only 1 laptop can be difficult for me.
  • I got to eat some really great ethnic foods the last few days.
  • I know how to take mass transit both home and all the way to Chicago in a few weeks. It shocks me I won't be scared.
  • as funny as this sounds, I got my eyebrows waxed just in time :D Some people reading this will understand...
  • Howard remembered to book the room my aunt and I are sharing as accessible so I (hopefully) won't have to schlep over to the condo to shower.
I was searching for clipart for this post and found the following. While neither the bride nor groom are in a chair at this wedding, it's nice to know this exists. 'This' is a clipart of a bride sitting on the groom's lap. He is sitting in a manual chair that says 'just married' on the back & has cans tied to it. It can be found at

Thursday, May 21, 2009

Thankful Thursday

This week I am thankful because...

  • my friends allow me to abuse them. I don't know what I'd do...
  • it seems to have stopped raining. Finally...
  • I got paid. I hadn't worked in awhile so I wasn't getting paid. But now I am.
  • my hair is pony tail length and not in between.
  • I will be volunteering in peds at a new (for me) hospital soon. it's been too long since I've seen the inside of a hospital.
  • I am moving.
  • a resturant by me brought back my favorite dish from there.
  • of txt messages that save me cell minutes.
  • of the ability to stick clothes in a dryer when I'm too pressed to wait for them to hang dry.
  • I don't think my summer's going to be so bad. Hopefully hectic & fun.
[image description: cartoon of a moving truck with boxes falling out the back]

Monday, May 18, 2009

People's Forum on Public Housing TOMORROW

Sorry for the late notice... I just got this now

Every spring the Housing Authority of Baltimore City (HABC) is required to publish a draft Annual Plan for the coming year and host a hearing to record community feedback. HABC's FY2010 draft plan includes the continued demolition of public housing units, with a replacement plan of only 53 rehabilitation projects and 90 court-ordered units. This trend over the years, as documented in a 2007 Abell Foundation report , has resulted in a 42% decrease in HABC's occupied inventory between 1992-2007 alone.

At this year's official hearing on May 4th, CPHA urged the Housing Authority to replace units it demolishes and to take a more regional approach to public housing. You can click here to see our testimony. Unfortunately, the hearing was not well attended, even by three of the four Housing Authority Commissioners.

We at CPHA want to invite fellow affordable housing advocates to join our partners ACLU of Maryland, Maryland ACORN, Maryland Disability Law Center, Homeless Person's Representation Project, and the University of Maryland Law School Community Development Clinic this Tuesday May 19th at 6:00 pm at the Greater Baltimore Urban League, 512 Orchard St., for a People's Public Forum on Baltimore's Public Housing. Here public housing residents, elected officials, and citizens will give testimony and make recommendations for the future development of housing for low-income families in Baltimore.


Please visit CPHA's Economic Recovery for Neighborhoods Initiative (ERNI) in the Convening Citizens section of for ongoing updates on stimulus funding opportunities. *Upcoming deadlines include: Community Development Block Grant (CDBG-R) on May 18, and Community Services Block Grant (CSBG) on May 22.*

Please contact Amy DeHuff to learn more.

Amy DeHuff
Housing Program Coordinator

Thursday, May 14, 2009

Thankful Thursday

I haven't done one of these in the past 2 weeks because I haven't been able to write one up wednesday night or Thursday and somehow I think Thankful Thursday on Friday is wrong. But here we go... This week I am thankful because...

  • of one very special friend who I would mention by name except that she has requested to always remain nameless on this blog.
  • of all the people who are suddenly dropping out of the sky to give me great opportunities.
  • Monday I was able to be that person for someone else.
  • I don't have swine flu and swine flu isn't nearly the scare we thought.
  • I'm getting some $ soon and can by my parents a wedding/ housewarming/ mother's day/ father's day present (It's not that much $ that I can buy them 4) if they ever email me a photo to make it from. I desperately need that $.
  • I am changing insurances in mere weeks and can have someone deal with my rapidly dilapidating powerchair I suspect needs to be replaced but pray it does not.
  • My mom sent me $10 in the mail.
  • I left my phone in Hillel last night and did not drop it in the street to get run over by a car as I did once before.
  • I know how to navigate transportation systems very well, and while annoying, I have faired very well since the cab program reduction.
  • I've met 2 new activist crips who are both under 30. It's nice to socialize with people who get me.
[image description: cute looking cartoon of a pig in the mud]

Wednesday, May 13, 2009

National Call-In Day TODAY

Ensure Long-Term Services and Supports are Included in Health Care Reform

Background: In coming weeks, the U.S. Senate will finalize legislation to reform America’s health care system. Long-term services and supports are essential to individuals with disabilities and seniors and must be included.

  • While over 48 million Americans do not have medical insurance, over 250 million Americans lack any insurance protection for the costs of long-term services.
  • Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.
  • There is an institutional bias within Medicaid that denies Americans with disabilities an equal choice for home and community services.
  • Hundreds of thousands of individuals with disabilities and their families are on waiting lists for Medicaid home and community-based services.

Proposals exist to help address these issues. However, they will only be included within health care reform legislation if Congress hears from you. Aging and disability organizations have joined together to host a national call-in day on Wednesday, May 13. Please join thousands of others across the country in calling your Senators to tell them how important it is to include long-term services and supports. Your calls can make a difference!

Call-In Information:

When: Wednesday, May 13 (Between 8AM and 6PM EDT)

Call-In Number: 1-866-459-9232 (Toll Free)

You will be asked which state you are calling from and will be connected to your Senators’ offices. Below is a sample script to leave a message.

Hello my name is __________ and I am calling from _________ . I’m calling to ask my Senator to help make sure long-term services and supports are part of health care reform. Long-term services and supports are essential to my health, well-being, and community participation because I have disabilities. I try to help people with disabilities and seniors get out of nursing homes where they got stuck. Please ensure long-term services and supports are included in laws to reform health care. Thank you.

Sunday, May 10, 2009

What a Difference a Day Makes

You never know the biggest day of your life is going to be the biggest. The days you think are going to be big ones, they are never as big as you make them out to be in your head. It’s the regular days, the ones that start out normal. Those are the days that end up being the biggest...

You never know the biggest day of your life is your biggest day, not until it’s happening. You don’t recognize the biggest day of your life, not until you’re right in the middle of it. The day you commit to something or someone. The day you get your heart broken. The day you meet your soul mate. The day you realize there’s not enough time because you wanna live forever. Those are the biggest days. The perfect days...


Today’s the day my life begins. Today I become a citizen of the world. Today I become a grown up. Today I become accountable to someone other than myself and my parents. Accountable for more than my grades. Today I become accountable to the world, to the future, to all the possibilities life has to offer. Starting today. My job is to show up, wide-eyed and willing and ready. For what? I don't know. For anything. For everything. To take on life. To take on love. To take on the responsibility and possibility. Today my friends our lives begin. And I for one, can’t wait.


Not a typical post for me I know, but something I think I may want to go back and look at from time to time and I want to know where to find it. I got a phone call from a friend Friday who woke me up to those words. Was not expecting her to quote the latest episode of Grey's. Those lines are surprisingly applicable to more situations then just Izzie's wedding... I will not ruin these words by more commentary, but you are more than welcome to comment.

Monday, May 4, 2009

When all Your Support System Ever Does is Fail You...

...go out and get a new one. DUH! I'm not going to go into the gory details here on a blog that the whole world can read, but I've found over at least the last two years that I have the "perfect" support system in place. Everyone is compartmentalized into their own little role, working on their own little piece of my life and they all coordinate seamlessly with one another. After all, no one can do it all, but the left hand has to know what the right hand is doing. Except that well, I've found that even though I think I have a person whose actual paid job description matches up with every individual part I need support for, they're not actually doing what it is they're being paid to do nor do they ever really communicate with each other. Not only that, but some even actively put up barriers that lead me down the path towards failing. Not so perfect, is it?

This brings me to, 'it's not what you know, but who you know.' You don't need to know absolutely everything about everything as long as you know someone who knows what you need to know and can tell you what it is you don't know. Am I confusing you?

So the other day a very good friend of mine told me to talk to another friend of ours and I did for a few minutes this afternoon. She suggested I join On Our Own. I'm not really into the support group thing, but the peer to peer mentoring Olmstead related stuff I am into very much so, so I think I will in fact give them a try. [The Supreme Court sure got that case right.]

The thing is though I feel a little awkward about the whole thing. A bit odd; somewhat out of place. I've toyed with writing a post about wanting/not wanting to be a BP blogger. About feeling the need to enter that world, to identify more with this side of myself, but feeling awkward about it all. I guess this is that post. I feel like I'm not fully representing myself by not identifying as a BP blogger, but on the other hand I don't feel like I'm fully part of that world. I feel like I'm on the fringes, like I don't really belong.

I'm not completely crazy, just ever the slightest bit. I don't hear voices or want to have sex with every guy I meet. I've never hopped on a train and gone to NYC on a whim (although now that I mention it, that does sound appealing). I absolutely refuse to get drunk. I don't enjoy it at all. My highs and lows are nothing like Kay Jamison's or Marya Hornbacher's or even Norah Vincent's (it's that sex thing, totally not into the sex thing), which are much less severe then theirs. [all of their books are EXCELLENT btw] I've very rarely gotten to the point where I don't leave my room for days at a time, when I just want to curl up and die it's always the result of too much of the wrong kind of medication, and whether or not I'm paranoid is she said/she said. See, just ever so slightly crazy. I've just got a screw lose, not 1 or 2 completely missing.

I want to be a BP blogger, I want join On Our Own, I'm rather curious about entering that world, but I feel like a fraud. You know in amusement parks there's a minimum height requirement to ride rides? Well maybe there's a maximum GAF score to qualify as just crazy enough and I'm over it. That, and I'm afraid if I start to hang out frequently with people who are depressed they'll make me depressed. I don't need people to drag me down, I need them to help me. I know, totally ridiculous. OOO Baltimore City/County has a young adult group that I'm just barely still eligible for. I need to get over myself and just go. I need to suck it up and deal with the fact that I can't take a cab that far anymore and that paratransit's not as good, and go. It's for my own good. After all, there's no help button that gets you an instantaneously functioning support system.

[image description: a help button on a computer keyboard]

Friday, May 1, 2009

Ableism Where I'd Least Expect it: BADD 2009

I was expecting to write another r-word post. There are some issues with the use of language that I am trying to understand. Like why it is OK to use crip/ple in certain circumstances but it is NEVER ok to use retard/ed. I totally agree with that, just looking for more insight. If you click on that link you will be directed to a post from March. Maybe if you have time you can read it and help me out w/o me having to come up w/yet another post. Also, check out my April post about the stigma surrounding people w/psyc issues, something I was thinking of expanding on for today. Thinking of and then didn't. I didn't post about those things for today because I looked at my blogroll and saw that Danielle had posted about a recent visit to Jordan's ortho. I just had to comment on that post about how important it is to recognize that ALL CHILDREN are impacted by medical settings. I want to be a child life specialist (CLS), and it's my duty to do so (then I realized, when I saw that my comment was longer then her post, if I had gotten too carried away). Here's a bit about what I said CLS do (the link goes to the child life council [CLC], which may have better info):

CLS are educators. While a lot of what they do is play (I've played UNO so much as a volunteer that at one time just looking at the cards made me want to throw up) it's not just play but rather experiential education. For example, the kid I played UNO w/for MONTHS was a 10yo w/cognitive issues. We were working on him getting his colors straight.

To many, many kids the hospital or any medical setting can be a very scary place. Especially if you're having something done. Those are the kids that we think of first when we think of CL. For example, at a very young age I was traumatized by cast saws. Used to scream bloody murder anytime anyone came near me w/one. CLS have a lot of specified training and are able to explain what is going on in a developmentally appropriate way and also come up with techniques to help the child through the procedure. Glitter wands and bubbles are particularly popular for whatever reason. Maybe, had I met a CLS, I would not have screamed so much.

[image description: The words child life specilists written in funky multicolored letters encircled in words. Under this is a cartoon face of a girl and a kid w/bandages on his head. The words that encircle this are cry, talk, hold hands, be there, teach, play, laugh, encourage, paint]

But what about the kid who's sibling, aunt, uncle, cousin, parent, best friend has to be in and out of the hospital? CLS do a lot of sibling education to explain what is going on. In a case where a parent was in a severe accident and is in the ICU hooked up to a plethora of scary tubes, a CLS might take a picture of the parent to teach the kid in advance what each machine is. Maybe they're scared but won't say so. The CLS can work through play &/or art to help the kid (patient or fam member) to express themselves and will be able to clear up any misconceptions. For example, just because someone "takes your blood pressure" doesn't mean it's gone.

The timing of Danielle's post is odd. I have a Drs appt at that hospital I used to volunteer at and it's been so long since I've been over there and so long since I've volunteered... I miss it. I've been thinking about that a lot lately. Thinking about whether or not I still want to be a CLS one day (my path will be longer then most). I do. I really do. Some day. The timing of Danielle's post is also odd because it is so close to BADD. I've been thinking about what to write a lot lately too. Believe it or not, there is rampant ableism in the child life profession--where I'd least expect to see it.

I've been a student member of the CLC since Oct 2006. The best part of being a student member (the only reason to fork over that amount of $ IMHO) is the child life listserv. I have learned SO MUCH from reading emails professionals send back and forth to each other about different issues in the field. Issues that may not seem important to you, but are very important, such as whether to wear scrub pants or "street" pants. Who cares, you might ask. Well, will patients/families accidentally mistake a CLS in scrubs for a nurse? Kids are scared of nurses. But if a CLS wears street pants will people know s/he works there? You get the idea. I've heard about different techniques to use with kids, ways to get other medical professionals to realize that CLS don't just play, gotten help on school assignments, and been able to offer my own advice sometimes as well.

There is just one thing though that I wish I didn't learn through the child life list serve. I wish I didn't have to find out that CLS are much too ableist. On 2 or 3 occasions over the years someone has posted that a former patient (usually now high school age) has come to them and asked to volunteer. There are some issues inherent in that which I am just too undereducated &/or inexperienced in the field to address. One is whether high schoolers should be allowed to volunteer at all. The first hospital I volunteered in allows high school volunteers, that second one does not. Another issue is how much time should pass between when someone is no longer a patient and when they can volunteer. There could possibly be some psyc stuff surrounding the former patient's issues that could become a mess for both them and the current patients. Those issues aren't the reasons people post though. There is just one reason people post seeking advice. That reason is because the perspective volunteer is mobility impaired and open about it. If they're open about it, then why is it an issue? Especially in this field.

If a child wants to play UNO, for example, but cannot hold the cards, can they then not play? OF COURSE NOT! There are these things called card holders. That hospital had at least 4 of them. If someone wants to volunteer and they are a full time crutches user do you not let them volunteer because maybe they cannot bring toys to a kid who cannot get out of his/her room (due to lack of available hands to carry the toys in)? OF COURSE NOT! But really, that was a major reason someone posted once. This girl wants to volunteer, uses crutches, and maybe she cannot push the toy cart from room to room (did you ever stop to think that maybe she can?). SERIOUSLY PEOPLE. That was the reason she was unsure of how to deal with the potential volunteer. Maybe it's unsafe... Ever think to ASK the girl what she thought? *sigh* I'm sorry if you're a CLS or a potential CLS, found this through a Google search and think I am being harsh. Maybe the presentation could be softer, but I'm trying to make a point and this is the way I am--I'm uppity.

I just cannot understand why someone goes into a profession where figuring out new ways to do old things (UNO w/card holder) or figuring out completely new ways to use old things (medical play is BIG in CL, ever try painting w/a syringe instead of a brush?) is probably a daily occurrence, cannot then transfer the skill to use on the other side of the coin. And it's not like they have to do this by themselves. The potential volunteer is 16, 18, maybe 24, not 2. They have all this life experience behind them and have probably thought about all the same things the potential supervisor has.

Other then my general fear of being around babies (I'm very afraid of dropping one and breaking it. Babies, especially sick babies, are very fragile) I never really thought of my CP as an issue before I started reading these emails (as a volunteer, as a full-time worker I wonder how this career choice will affect my fatigue). Supervisors asked me what I can and cannot do. Can I push 2 manual chairs at once? Can I push 2 IVs at once (both attached to the same person)? I'm very upfront in my response to these inquiries. My answer is "I don't know. We'll find out." I mean, I've never tried before. How am I supposed to know? Pushing 2 chairs at once didn't cause anybody any harm, but in the future some kids will just have to wait and be brought back to the unit from the playroom in 2 trips instead of 1. It was interesting... Trying to push 2 IV poles was interesting as well, but only b/c the teen they were attached to was too impatient to walk as slow as I needed to in order to manage them. In the future, I'll just tell them to walk slow. If I thought I might be putting someone in danger (can you pick up the crying squirming baby?) I'd say so!

[image description: a barefoot bald guy in a pink hospital gown standing & holding an IV pole w/2 bags on it]

Maybe there are other reasons why a potential past patient volunteer is just not a good match. Maybe it turns out that watching other people about to get organ transplants after they just had one a year ago gives them panic attacks because they're afraid that person's won't take or that theirs will reject. If they're having panic attacks on site they can't be there until those are resolved. I get that. But to question a person's ability to effectively volunteer simply on the basis that they use a wheelchair, for example, is ridiculous. Maybe they cannot interact w/kids w/contact precautions b/c it's impossible to clean off their wheels well enough to provide top notch infection control and their hands have to touch their wheels, but that doesn't mean they can't volunteer at all, or that they'll be a danger to any patients. They just won't go in that room. Maybe that volunteer will stay in the playroom for their entire shift releaving their supervisor from playroom duty so that the supervisor can do bedsides during that time. Is that so bad? Maybe I cannot hold babies safely but a paraplegic in a chair can because their upper extremities are much more stable then mine. Don't judge a book by its cover. Don't judge a crip by their chair.

So far I've been lucky enough to volunteer places where I haven't been judged, and I sure hope that continues. I've heard stories. I won't make this post any longer by telling you the benefits of having a crip volunteer w/hospitalized children. If you're reading this through BADD you already know this and I'd be preaching to the choir. I just wish that more CLS knew what we know.

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