I Should Have Been Blogging About Child Life Month

Did you ever think you could cook while you were hooked up to dialysis? And why don't they do this with adults too? Everyone needs help it seems, learning a "kidney diet."

Click on the CL Month tag below to see all the videos from this and last year.

I Should Have Been Blogging About Freedom Fridays

Here's some food for thought

Well, if crime fighters fight crime and fire fighters fight fires, what do freedom fighters fight? They never mention that part to us do they? ~George Carlin

Please consider donating to the 6th Annual Fun*Run for Disability Rights. It's May 1st at Upper Senate Park in Washington DC, the first day of the spring action. Even if it is just $2, all of Maryland ADAPT will be forever grateful. Your money is tax deductible and is split 50/50 between Maryland and National ADAPT.

What does National ADAPT use the money for? Legal fees, hotel rooms, lunch during national actions, copying, bull horns etc. What does Maryland ADAPT use the money for? Pizza and soda, hotel rooms, lots and lots of stamps (surprisingly in 2011 we do a lot of snail mail). If we get enough $ we can apply for federal 501c3 status. The fee is STEEP!

Thanks in advance. You can donate til June!

Next White House Disability Call

The next call will be held on Thursday, March 31 at 5:00 PM Eastern Time. It will feature remarks from U.S. Secretary of Education Arne Duncan, and include introductions to other Obama Administration personnel.

Details for the call are as follows:

Dial in for listeners: United States: (800) 230-1059

Title: White House Disability Call (use instead of code)

For live captioning during the call, go to

http://www.fedrcc.us//Enter.aspx?EventID=1734047&CustomerID=321.

Those interested in participating in the call are encouraged to call in at least five minutes prior to its start. This call is off the record and not for press purposes.

If you would like to be added to the White House Disability Group email distribution list, please email sfeuerstein@who.eop.gov and provide your name, email address, city, state and organization (if applicable).

Please let others know about this call so that they may participate.

I Should Have Been Blogging About Child Life Month

Child Life Specialists discuss CaringBridge. Click on the CL Month tag below to see all the videos from this and last year.

I Should Have Been Posting An Update on Finding a PA

It has been 3 weeks since there has been an update, and in that time, NOTHING has happened. I still don't have anyone. When I discussed the idea of classified ads with my mom, she thought it was a good idea, but when I told her how much they'd cost (you run them more then once of course) she kind of blew me off, told me she'd get back to me later, and I'm still waiting. I could just do it, I'm 26 years old (practically, 2.5 weeks away!), I don't need mommy's permission to decide if I think it's safe or not, but it's a $$$ thing.

In other news, a guy from my support group has offered to drive me for free. So I guess I can't say nothing happened. I'm inclined to take him up on it, but on the other hand I don't really know him all that well. He's just started coming. Yes, I know if I hire someone from an ad I place I won't know them at all, but that is clearly a business relationship. This, I am not so sure. He says he's not in school at the moment (he's college age), and not working, and bored, but I think he has a thing for me. When I discussed this with one of the group facilitators, whom I have known almost 2 years, he said that he thought he was just being nice, and is bored, and he doesn't think he has a thing for me. I should do what I feel comfortable doing.

It'll certainly save me the classifieds fees, although I won't allow him to drive me for free. It's aprox 40mi round trip and I assume 2.5-3hrs of his time and gas is well over $3/gal

[this picture of me and Cadance the horse is 3 years old, not new]

I Should Have Been Posting This Video

Yes, that's ME! Why do my eyes keep darting around? And where can I get that photo of me at 3:07? Self-centered tangent, I know, but what a GREAT profile pic that would be...

This video was recorded outside the Baltimore City Public Schools headquarters at a pro-Wisconsin MoveOn rally. I went because I told a friend I didn't want to schlep down there, but I'd go if she went. She said she'd only schlep down there if I went. She canceled on me at the last minute, when it was too late to change my paratransit ride. A frustrating day, but worth it I guess, now that I've seen this.

There was a guy off to the side interviewing people after it was over, and since I've joined ADAPT I can't pass by a camera and pass up a chance to spread our message (sounds like I'm a missionary, doesn't it? That's not how I mean it). So I rolled over and this guy asked me one simple question. "Why are you here?" It turned into this.

Two things that bug me: 1) I call ADAPT a "cross disability rights coalition." I meant to say organization, but I used to belong to a Maryland statewide group, the Cross Disability Rights Coalition, so I say "cross disability rights" and my brain goes straight to coalition automatically. Oh well.

2) I keep talking about "taking money away from vulnerable individuals." Really? PWDs are vulnerable? Don't call ME vulnerable. I can't believe I spread such ableism. Please forgive me. I was thinking on my feet (so to speak, I was sitting, haha), but there had to have been a better way to explain the urgency of getting the bill passed.

Overall though, I think I did a great job.

I Should Have Been Blogging About Child Life Month

Here's one about yoga. Click on the CL Month tag below to see all the videos from this and last year.

This Has Nothing to do With This Blog

I got it in a chain email, and I thought it was important, especially since I'm going to be traveling more as part of ADAPT

You arrive at your hotel and check in at the front desk. When checking in, you give the front desk your credit card (for all the charges for your room). You get to your room and settle in.

Someone calls the front desk and asked for (example) Room 620 (which happens to be your room). Your phone rings in your room. You answer and the person on the other end says the following, 'This is the front desk. When checking in, we came cross a problem with your charge card information. Please re-read me your credit card number and verify the last 3 digits numbers at the reverse side of your charge card.'

Not thinking anything you might give this person your information, since the call seems to come from the front desk. But actually, it is a scam of someone calling from outside the hotel/front desk.They ask for a random room number. Then, ask you for credit card information and address information. Sounding so professional that you do think you are talking to the front desk.

If you ever encounter this problem on your vacation, tell the caller that you will be down at the front desk to clear up any problems... Then, go to the front desk and ask if there was a problem. If there was none, inform the manager of the hotel that someone called to scam you of your credit card information acting like a front desk employee.

This was sent by someone who has been duped........and is still clearing up the mess....

P.S. Please everyone, help spread the word by forwarding this email to everyone you know.. Who knows, you might just help someone avoid a nasty experience.

ANYONE travelling should be aware of this one!

What NOT to Blog About

If I was writing the blog post I've been dying to write, it'd be titled "The Benefits of Masturbation." And it'd be a very candid post, because there are several IMHO. But I won't ever be writing that post. I can't ever write that post, however much I'm dying to do so. Potential employers might read this blog and that's just too personal. As hard as I've tried not to mention my last name (ever), if you google me, you'll find it. You might say "but you write about sex a decent amount of time." Which is true, but I don't write about my sex life (because it's non-existent), but rather if you notice my posts are more about relationship dynamics as a person with a physical disability. I'm kissing the "appropriate" line (pun intended), but masturbation is crossing it.

However, I'm hoping this post might generate many comments and we can start an honest conversation without me revealing too much. Or someone might let me guest post on their blog completely anonymously. I can't wait to see what comes up, and I can't wait to see what google search terms lead people to this post.

I Should Have Been Blogging About Freedom Fridays

My apartment building gives out cheesy prefabricated newsletters at the beginning of every month and since we're in America and our independence day is in July the newsletter from last July had a whole bunch of quotes about freedom. That'd be great to try to solicit Fun*Run donations, I thought. So here is the first of several weeks worth of Freedom Friday quotes.

The secret of happiness is freedom. The secret to freedom is courage. ~Thucydides

Please consider donating to the 6th Annual Fun*Run for Disability Rights. It's May 1st at Upper Senate Park in Washington DC, the first day of the spring action. Even if it is just $2, all of Maryland ADAPT will be forever grateful. Your money is tax deductible and is split 50/50 between Maryland and National ADAPT.

What does National ADAPT use the money for? Legal fees, hotel rooms, lunch during national actions, copying, bull horns etc. What does Maryland ADAPT use the money for? Pizza and soda, hotel rooms, lots and lots of stamps (surprisingly in 2011 we do a lot of snail mail). If we get enough $ we can apply for federal 501c3 status. The fee is STEEP!

Thanks in advance. You can donate til June!

I'm Leading a Walking Group!

We had a staff meeting on Wednesday for my branch of OOO and it was decided that we're finally going to be doing something about the expressed need for some more structured activities instead of just free time before our support group. OOO operates what are classified as "Wellness & Recovery Centers," so we were all thinking along the lines of "Wellness" type activities. Somehow we had no idea that OOO Inc has a wellness initiative now. I guess great minds think alike, or some such thing. So for example, now the 2nd Friday of every month someone is going to be leading meditation.

In the course of conversation I reminded people of the idea someone had expressed over a year ago about starting a walking group. Although that person had expressed the idea of getting a group together outside of center hours, now that it'll be light out, why don't we get a group together and go on a half hour walk before group on Wednesdays and walk around the grounds of the hospital? "I'LL LEAD IT!" I said.

I did this for several reasons:

1. As a substitute facilitator I get paid rather sporadically, and working even just 1/2hr per week regularly might possibly qualify me for benefits I wouldn't otherwise.
2. My Dr (physiatrist) wants me walking 20mins daily and even after my chair broke I still don't. I get paid a whopping $8/hr and somehow the $4/week for the half hr walk is motivation.
3. I did it for the gimmick of it. You'll see to the right a picture taken of me in 2007 in Israel wearing sunglasses, a hooded sweatshirt, ID badge, with my crutches. You don't usually think of someone who looks like that leading a walking group. I figured it'd get more people involved. You can't really say it's too strenuous for you. I loved the look on someone's face yesterday "You're leading the walking group???"

Someone else asked me if I'd be walking or taking my chair. I answered "It's a walking group." Seeing as I'm both leading and walking, people are going to be "keeping up" with my CP walking pace. I have a feeling no one else will be getting exercise but me. I'll be hyperventilating by the end, as I tend to do, and they'll be feeling like snails. But it meets my selfish goals.

Therese Weisbrot of Sloan Kettering Mentions Stress Induced Regression

Also found through the Child Life Council Facebook Page. Click on the CL Month tag below to see all the videos from this and last year

"Left Out in the Cold" Press Release

On the eve of the second reading of the government’s controversial Welfare Reform Bill, on 9 March, disabled activist Kaliya Franklin stripped off to demonstrate what the result would be for disabled people across the UK if disability benefits are slashed to the bare minimum.

The photo shoot depicts a naked Franklin lying on the sand on a wintry beach, next to her empty wheelchair.

“I was absolutely frozen when I took my clothes off for the photo shoot,” says Franklin, “but it was nothing like as cold I and other disabled people will be if the government removes our essential benefits.”

The Left Out In The Cold awareness-raising campaign is being organised by disability rights group The Broken of Britain, of which Franklin is a founder and director.

Says Franklin, “It’s vital that every able-bodied person remembers they are just an accident or illness away from being disabled themselves. Many people think if they do become disabled that the state will look after them.

“But the fact is that even under current provisions, disability benefits are not enough for disabled people to live on. If the Welfare Reform Bill is passed, the situation will become unimaginably worse.”

In January, Franklin released a video on YouTube that explained how able-bodied people would be in for a major shock if they found themselves needing to apply for disability benefits. The video can be seen at http://www.youtube.com/watch?v=q7EXSpmrVMU.

The Broken of Britain group has been campaigning since summer 2010 to raise awareness of the government’s wider anti-disability policies. The group has consistently drawn attention to disabled people being the target of unjust government rhetoric and sham consultations, tabloid slander and political myths.

It says: “We are now the targets of deep and damaging cuts to disability services that are contained in and symbolised by the Welfare Reform Bill. The Bill disguises cuts and changes to a number of benefits, from housing benefit to Income Support that will punish disabled people.”

Notes for editors

1. Kaliya Franklin and other case studies are available for interview.

2. A high resolution version of the campaign photograph is available on request.

3. For more information, contact Rhydian Fôn James at rhydian@thebrokenofbritain.org or 07774021785, or Kaliya Franklin at 07714208602

4. Contribution-related Employment Support Allowance will be restricted to 365 days, meaning that a married claimant would be unable to claim after a year if their spouse works.

5. The Welfare Reform Bill confirms that Disability Living Allowance will be replaced by the Personal Independence Payment which will use unfair assessment and conditions to disqualify 20 per cent of the current DLA caseload.

There is no evidence that supports government’s claims that DLA is “broken” and in need of reform. In fact, most evidence suggests that DLA is an efficient and popular benefit, and this support includes the vast majority of the DWP’s own research.

The inclusion of this benefit change in the Welfare Reform Bill took place before the consultation on DLA reform was completed.

6. Other cuts to disability services not included in the Welfare Reform Bill are:

• Plans to remove security of tenure from social housing tenants, as costly adaptations are a barrier to moving regardless of size of property.

• Many changes to the provision, entitlement to and charges paid for receiving social care and disability services provided by local authorities.

• The Independent Living Fund which provided for the highest level support needs in combination with the local authorities is now to be scrapped without consultation.

• Access to Work reform redefines what it is "reasonable" to expect an employer to provide for disabled staff, meaning it is likely to push many currently employed disabled people out of work and back onto benefits.

7. Disabled people are more likely to live in poverty than any other group in the UK and more likely to be unemployed or in low paid jobs. 60% of those with a work-limiting disability are unemployed, with 25% wanting to work.

Left Out In The Cold by Kaliya Franklin is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.

Permissions beyond the scope of this license may be available at http://thebrokenofbritain.blogspot.com/

Took this straight from Emma's blog. Hope you don't mind!

I'm Disappointed in You Sen Cardin

On Monday I went with 2 other Maryland ADAPTers to a local Senior Center because Sen Cardin, one of Maryland's 2 federal senators, was doing a town hall on health reform. I waited to write about this because I thought, and was told by a member of the County Executive's staff, that full footage of the hr would be available here. Apparently not. Now this post will be briefer then originally intended because it's been so long I can't remember exactly what everyone said.

Basically, Sen Cardin spent most of his time talking about the budget and the fact that the government is about to shut down (see yesterday's post, they're still trying to pass this year's budget and if it doesn't pass soon the whole government will shut down) and how disastrous this will be to seniors. But he did talk some about the health reform. Not at all about long term care, of course, so when my turn to ask a question finally came I stood up in an ADAPT shirt and said

"Can you please talk about efforts to reduce the Medicaid institutional bias so that seniors and people with disabilities, such as myself, can remain in their own homes."

I'm disappointed in you Sen Cardin. I phrased my question in such a way as to make him, and Maryland, look good. I didn't attack him for not supporting the Community Choice Act, but left it open for him to talk about programs such as Money Follows the Person (MFP) and the Community First Choice Option (CFCO, formerly the CLASS Act).

What he basically said was that Medicaid is operated by the states and states can choose to operate home based programs if they want to. What he should have done was talk about the recent expansion of MFP to include 13 more states (now I think we're at 42, correct me if I'm wrong) and the fact that Maryland is an original MFP state. He could have explained what the CFCO is. Maryland has money in next year's budget to explore whether we want to be a CFCO state. Instead he said this isn't a federal issue.

The federal government mandates that they won't help states cover their Medicaid costs unless they cover institutional care. Community services are optional. Community services have been cut every year while in Maryland, nursing facility rates have gone up about 6.6%. It's similar in every state. Making a bigger federal push for home & community based services would change that situation.

This IS a federal issue Sen Cardin.

Deficit Reduction on the Backs of the Most Vulnerable

originally from http://www.americanprogressaction.org/issues/2011/03/pdf/hit_budget_cuts.pdf
hit_budget_cuts

It's CHILD LIFE MONTH

I didn't think I was going to do video segments again this year, but then I "liked" the Child Life Council on facebook back in December and found this GREAT video

Visit msnbc.com for breaking news, world news, and news about the economy

Click on the CL Month tag below to see all the videos from last year.

My National Pancake Day Experiance

Totally unrelated to this post, Emma says it's the International Day of the wheelchair today. If I had it in me I'd write the post I've been meaning to write for the last 2 weeks since my Jazzy broke, but I don't, so that'll have to wait for another day. However, if any readers know of other "International Day of the Wheelchair" posts, please leave links in my comments.

Last year I wrote about how I've always wanted to go to National Pancake Day (NPD) and never make it. Today I'm writing to say that I went today, and I'm totally dissatisfied. First of all the IHOP my friends chose to go to was rather drabby and a could use a fresh coat of paint. It was also chaotic (to be expected) and the acoustics were bad, so it was hard to hear the people at the other end of my table, and there were only 5 of us! It didn't make for a relaxing experience.

What I'm most dissatisfied with is that I have no idea where my donation went, or even if my donation went anywhere at all. My friend commented that maybe they're pocketing it all. I replied "Maybe they are." I wouldn't be surprised. Ok, so I only donated $1.14 in change -- I am low income after all -- but every little bit helps and I hope my $ goes somewhere. Nowhere in the restaurant was there clear signage as to where the money was going. The National Pancake Day website says the $ goes to the Children's Miracle Network (a charity close to my heart) or other local designated charity. In the DC area the $ goes to the Leukemia & Lymphoma Society (LLS) (another charity close to my heart), but I of course am in Baltimore.

All the materials in my restaurant said something like "Make a miracle for a child by donating to your local charity," but nowhere did it say what that charity was. When the waitress came by she asked us if we were there for the free pancakes but never mentioned a word about making a donation. The giant cardboard donation box had a sign taped on it that said "MAKE A WISH," which then had me looking quizzically. Do they want me to wish on my donation or is the money going to the Make a Wish Foundation?

Seeing this look on my face the hostess said "The money is going to BREAST cancer." [emphasis mine] Which only leads me to believe that the hostess is illiterate, and that the $ is in fact going to LLS. You see taped to a window all disheveled like and strewn all over the floor were these paper signs that said "BEAT cancer" [emphasis mine] on the top with the LLS logo on the bottom and ample space in the middle to write your name that you had donated.

"BEAT" looks an awful lot like "BrEAsT" doesn't it?

I wish they were more organized. I wish I knew where my $ was going. I won't be going back to that IHOP next year. Anyone else go to NPD? How was your experience?