Wednesday, September 9, 2015

2015 National Independent Living Conference in D.C.

July 26-31, 2015

I was excited. A week with so many others that share a passion for disability advocacy and rights. …. in the big city too? Wow, this is going to be amazing!

I’ve never been to a National Independent Living Conference (NILC) so I was overwhelmed. I really didn’t the hang of it until mid week. I heard the conference had booked hotels in that block. I was grateful to have stayed at the actual hotel of the conference. The beautiful Grand Hyatt was amazing. The design of our ADA room got my approval too!

Rumor had it that this year was much bigger in terms of the number of people that where there. There was a huge increase of youth attendees than there had been in the past. Makes sense right? 2015 was the 25th Anniversary of the Americans with Disabilities Act (ADA). This was the year of Generation ADA!

Monday I attended a workshop on reforming the definition of Social Security. The panel was excellent. The jist of the workshop is similar to my blog entry. The way Social Security is currently totally undermines a persons mind and spirit. Rather than giving supports for employment, a young person has to surrender their determination to become employed and abandon hopes of leading independent lives in order to receive benefits.
At the Annual Meeting of the National Council on Independent Living in July 2014, a delegation of approximately 700 individuals with disabilities passed a resolution urging NCIL to push for a redefinition of disability as it relates to the Social Security Act.

The first night we all gathered to hear speakers. Two that were most memorable to me were, former Senator Harkin and G. H. W. Bush’s grandson, Pierce Bush. (George H. W. Bush signed the ADA into law on July 26, 1990) A short interview was shown of Tom Ridge interviewing George H. W. Bush earlier this year. Bush called the ADA one of his "Proudest Achievements". The activities that night were a perfect way to celebrate the 25th Anniversary of the ADA.

The second day there was a briefing on the march to the Capitol and meeting with our Representatives. I made sure to listen up for that, even though it was hard because some of us were spilling out into the hallway. I was glad there was a teleprompter to read. A good example of how one device geared towards aiding one disability helps us all.

The march to the U.S. Capitol to talk to our Representatives was empowering. We lined up on the sidewalk with our state. I heard there were 1,400 people on the march. The motorcade was ready to assist us in practicing our freedom to rally, which a great feeling. The march took much longer than it took the day before when Brian and I walked to the White House and then the National monument. (The White House had so many different trees. I would’ve like to learn where they came from and who brought them over. I love trees.) We took Pennsylvania Avenue to the lawn by Capitol. There were people running up and down to line to check if we were okay. They also kept us with chanting phrases such as, “Nursing homes have got to go! Hey-hey Ho-ho!” A paratransit taxi cab that passed by a couple of times gave us some encouraging honks. Brian saw one driver flick us off and make a u-turn at a stoplight because he was tired of waiting to cross. So exciting! There on the lawn, we had lunch and listen to speakers “Rally the Troops”.  The huge Justin Dart float was there. It remind me when I was there years ago for a My Medicaid Matters rally and his REAL hat was up on stage.
The two most memorable moments from lunch on the lawn were when Congresswoman Tammy Duckworth and Senator Bernie Sanders spoke. Every now and again a speaker would ask us to move closer to the stage, I found that funny. We had wheeled, walker, scootered, canned in 90 degree July heat, some of us were medically fragile …. no way were we moving out of the shade into the blazing sun. Ha! There were a few up by the stage though. I remember Michael from Arkansas up there waving the ADAPT flag. He was so proud to do that. *

The third day was the resource fair, awards luncheon and the NILC’s Annual Council Meeting to vote for new board members. At the luncheon I remember a Japanese man using a wheelchair and his PCA sitting at our table. They were using ear buds to interpret what was being said on stage. Earlier that week, I tried speaking with another pair of guys from Japan. They had some use of English so that was good. One award winner I took note of was Jensen Caraballo. He was a young man that received an award for advocating hard to get himself out of a nursing home. At the council meeting each person who wanted a board position gave a speech, or had somebody read one if they were not present. This part of the meeting was very interesting to me. Being a member of the Virginia Independent Living Council, I thought I was allowed to vote, but when I was in line to receive my voting card they did not issue me one. The speech given by a young women I thought was best. Maybe it was the conference theme was Generation ADA that she was elected to a NILC board seat, but I thought it was very fitting.

I attended a workshop on Parking Equity. It was a presentation on a report that had been done on an experiment done on accessible parking in Kansas. It was intriguing to me because as a ramp van user it seems people don’t know what the signs on the parking spots mean. (Read my commentary that was printed in my local paper about this issue.) The pair of women conducting the experiment survey two parking lots at peak usage hours. They documented on things such as who used what spot, ramp vehicles or non-ramp vehicles. They tried four different signs to indicate a ramp vehicle parking spot. Each sign had different results. The goal of this was to discourage non-ramp vehicles from parking in the spot designated for ramp vehicles. 

This study found that alternate signage for van-accessible parking spaces can prompt drivers of vehicles without ramps or lifts to use a regular accessible space when available, reserving the van accessible space for Ramp/Lift-Equipped Vehicles (RLEV) users.

I also attended a workshop on the next generation of Long-term Services and Supports. The workshop panel discussed the current Medicaid long-term support structure and how it effects this generation and the next. The shift is toward community inclusion, so big things are happening with the new ruling from Centers of Medicaid Services. It was a packed room. The panel was great. Andy Imparato was a panelist and I got my picture taken with him afterwards. One of the coolest things about NILC was the chance to meet advocacy rockstars that I’ve been following for years online! Emily Ladau also recognized me from online at her social media workshop she led with Maddy Ruvolo.

That evening there was a social. it was so much fun! A Virginia co-board member and I sat together. At the table with us, were a mother and son which I saw at the Capitol Ale Brewery during lunch earlier that week. There was also a very funny man with has wife and daughter. He was making me laugh so much! Kayla, the Disabilities Youth Ambassador spoke. I was moved and felt hope for the future as I listened to her speech coming from her communication device. Women that were all the way from Japan were handing out fans and packets of soup to the women. I thought that was so sweet. We took them out on the dance floor as a way of saying Thank You.

One night Brian and I caught an elevator with the youngest NILC attendee, Peter!  It was such a thrill that week to meet and talk with people from New York, Alaska, Arkansas, California and Japan!

On the last day, there was a summary given by each state on what had happened during their meetings with Representatives or with their assistants. There were a wide range of responses people got, some excellent some not too hot. But hey, that’s politics.

People who attended the conference used these hashtags during the week: #ADA25  #NILC2015  #GenerationADA  #CIA4ADA
Our peers that couldn’t be there due to economic or health reasons were not forgotten about, they were mentioned many times. It humbled and reminded me why we were there, to advocate for others. This amazing week was a celebration of diversity, acceptance, advocacy and networking. A fellowship with advocates that left me feeling empowered and confident about the future! It was an honor to be there.

* I missed getting to meet with my Representative, because were on a mad search for a restroom after the march and lunch. I did take a self guided tour of the U.S. Capitol museum (Exhibition Hall). When I returned home, I did manage to get a very short email conversation going with my Representative’s Legislative Assistant about the Community Integration Act (CIA)
Watch Flip Polizzi’s video to his Representative about how CIA would change his life. I met and talked with Flip in one of the many lines waiting for the elevator down to the conference. He is far too young and has too much spunk to be trapped in a nursing home. 

Official NILC photos by Michael Clegg.

Official NILC wrap up blog.

(pictures not my own)


Monday, June 8, 2015

The Healthcare Business Need to be Bitch-Slapped by The Person-Centered Planning Superhero

I know this isn’t a disability community only related problem, though the disabled community routinely gets marginalized. Some people with disabilities' voices never get heard. By ignoring the expertise of the patient, the country is wasting lots of money. How can preventive medicine truly work when a patient's voice is ignored? EVERYBODY has suffered from this at one point or another.

When considering these two situations think, why is the disability the #1 scapegoat?
Stop blaming the disability and keep your eyes out for double standards!

1.   Marcy, who has a Intellectual Disability (ID) lives in a group home and is moved to another. She starts acting out and is hard to handle. Her support staff are baffled because she has never acted this way before. They try correcting her behavior by removing her daily activities. Marcy really enjoyed and looked forward to them. By removing them Marcy’s behavior got worse and terrible things happened.

- Turns out, Marcy did not like her roommates at the new group home. EVERYBODY has the choice of who they live with! Why didn’t Marcy?

2.   Ivy notices she’s starting to have hip pain. She tells her power chair Durable Medical Equipment Dealer (DMED). Instead of listening, nothing is done. Time goes on and her pain worsens 100 fold. She is sent to multiple specialists. She is either sent home with no relief, or sent to another specialist. Over a course of a year, Ivy sees the same Physical Therapist (PT) about four times. The PT is arrogant and Ivy concerns are ignored. Ivy has had passive muscle stretching all her life. The PT refuses to stretch her.

- Ivy has had the chair for nearly a decade. EVERYBODY’s body changes with time. Even though there’s nothing wrong with the power chair, Ivy probably needs a new chair. (The PT recommend I go to a CHKD specialist. I ignored her for a change and saw a chiropractor. This will mark the second time I realized I’ll get better treatment if I go to a doctor that the general public uses.) There is nothing special about being “Special”. The chiropractor saw me twice a week until my hip was better.

* "Person-Centered Planning discovers and acts on what is important to a person. It is a process for continual listening and learning, focusing on what are important to someone now and in the future, and acting on this in alliance with their family and their friends" …. to improve quality of life.


UPDATE: 2/13/16
My hip is much better. Though the pain has moved into my back.
I still believe this could’ve been prevented.
I have found nobody who specializes in aging with Cerebral Palsy. EVERYTHING is geared towards kids. Also attitudes toward an adult with a disability compared to children is different and needs to change.

I found an article that is for muscle strengthening. Which is what the PT refused to do.
All these exercises I remember from childhood. So what, are they EXCLUSIVELY for kids?
I started doing the hip extensors exercise and sit ups and they have helped tremendously. I continue to do the strengthening exercises from the Chiropractor.

But WHY "pediatric" and "rehab"?
What exactly am I rehabbing from?

Strength Training by Rehab Management


Monday, September 8, 2014

Local Special Education Committee - My Disability History Presentation

This is a speech I gave to a local Special Education Committee
(I also mailed a copy to all the area High School Assistant Principal and/or History Department Heads)

Virginia has a resolution designating the month of October as Disability History and Awareness Month. 
I’m here to seek your help in gathering all students for my Disability History presentation. It’s about 30 minutes long. It’s a powerpoint. I also have on DVD.

I know this need to be an inclusive event. I have a few suggestions on how to do this:

- Work with history teachers to make coming to the presentation extra credit.

- Have a $20 gift card raffle, Best Buy OR movies. I will provide the gift card.

- Investigate how the ****** SEAC can advertise it to all students.
Maybe in morning PA announcement? 

Disability awareness is important but I feel that you can't necessarily teach someone how to feel towards one another. Though by teaching about the history of a group it will lead to respect, compassion, understanding and breaking stereotypes about people with disabilities.
Teaching Disability History to all students will promote inclusion and improve disability employment rates.

Thank you for your time.

UPDATE:  10/3/14 
I did receive a tiny bit of interest from the SE Committee in the form of emails, but I was not invited to give my presentation. I heard from a source they did recommend it to the school board without the gift card suggestion.
Thanks to a Partners in Policymaking connection, I'll be presenting to two classes at a local elementary. Click here to read how it went.


Friday, July 18, 2014

Ask Not What Your Country Can Do To Include You, Ask What You Can Do To Include Yourself In Your Country

I got nearly 100 likes on Facebook when I posted this, so I decided to Blog It!

I heard behind me at my local Recreation Center (pool) today,
“She can’t talk.” in a young sweet voice.

I turned my wheelchair around and in a kind cheerful tone said, 
Yes I can. How are you doing today?”

A few seconds went by, The four young girls started smiling. The staff person with them said they had went into the deep end of the pool.

“Was it fun?” I said with a smile.

They nodded and one of them said yes.
I love kids, they say what is on their mind. so simple and without malice.

All you have do is show up regularly. The general population will get used to you. 
it’s no big deal.
Relationships and even friendships might form. Wow, what a concept.

ALSO this makes me ponder and remember.
- This young girl couldn't have been more than 6 and already the "can't" stereotype had set in. I can't wait for a couple of more weeks until Youth Leadership Forum ... a whole 5 days of telling them "You Can".

- Today I’m reminded of the reverse lie I told myself in tough situations when I was young. 
I told myself, “Ivy, you do belong." 
I really did belong that's why I’m calling it reverse. Fake it until you make it. Shame on whatever people or situations that made me reassure / lie to myself.

In the Facebook comments I said:

I hope parents don't 'unteach' my example. lol! It's the adults you have to worry about you know.
As I think back on this moment today, it was so awesome the staff person helped the convo along. She KNEW what I was up to. Major kudos to her.
Either I got there a minute too late or I wasn't listening until I heard CAN'T but I’m curious why the young girl said that in the first place? So cute! I’m very tickled by this little moment in time.


Sunday, March 16, 2014

Rustin Cohle Quotes - HBO True Detective

Hats off to HBO, fine job!

The one-liners (or a few) in this show were fantastic. Not to say I subscribe to what was flying out of Rust’s mouth, but maybe I do in some strange way. It intrigued me enough to blog about it. 
By the third episode I knew I wanted to make a list of my favorite Rust quotes, here they are:

“It's thursday and it's past noon. Thursday is one of my days off. On Thursdays I start drinking at noon. You don't get to interrupt that.”

“I see a propensity for obesity. Poverty. A yen for fairy tales. Folks puttin' what few bucks they do have into a little wicker basket being passed around. I think it's safe to say nobody here's gonna be splitting the atom, Marty.”

“Certain linguistic anthropologists think that religion is a language virus that rewrites pathways in the brain. Dulls critical thinking.” 
Marty: Well, I don’t use ten dollar words as much as you, but for a guy who sees no point in existence, you sure fret about it an awful lot; and you still sound panicked. 
“At least I’m not racing to a red light.”

"People out here, it's like they don't even know the outside world exists. Might as well be living on the fucking Moon. It's all one ghetto, man. A giant gutter in outer space."

"I think human consciousness, is a tragic misstep in evolution. We became too self-aware, nature created an aspect of nature separate from itself, we are creatures that should not exist by natural law. We are things that labor under the illusion of having a self; an accretion of sensory, experience and feeling, programmed with total assurance that we are each somebody, when in fact everybody is nobody. Maybe the honorable thing for our species to do is deny our programming, stop reproducing, walk hand in hand into extinction, one last midnight - brothers and sisters opting out of a raw deal."

"If the only thing keeping a person decent is the expectation of divine reward then, brother, that person is a piece of shit. And I’d like to get as many of them out in the open as possible. ....
You gotta get together and tell yourself stories that violate every law of the universe just to get through the goddamn day? What’s that say about your reality?"

"The world needs bad men. We keep the other bad men from the door."

"Death created time to grow the things that it would kill."

“There is no such thing as forgiveness. People just have short memories."

“Been that way since one monkey looked at the sun and told the other monkey, 'He said for you to give me your fucking share.' People… so god damn frail they’d rather put a coin in the wishing well than buy dinner.
….Yeah, well if the common good’s gotta make up fairy tales then it’s not good for anybody.”

“People incapable of guilt, usually do have a good time.”

“All your life, all your love, all your hate, all your memory, all your pain... is all the same dream: The dream about being a person.”

“Men, women... it's not supposed to work except to make kids.”

“Look, as sentient meat, however illusory our identities are, we craft those identities by making value judgements.
Everybody judges, all the time. Now, you got a problem with that, you’re living wrong.”

“Life’s barely long enough to get good at one thing. So be careful what you get good at.”

“This is a bar, not a fucking bedside. And being stupid’s not the same thing as catching sick.”

"Well, once there was only dark. If you ask me, the light's winning."

Tuesday, October 8, 2013

Vanguard Landing, a choice or same pattern of segregation in Virginia?

I spoke a city council meeting 10.8.13

As a person with a disability and an employee of Moms in Motion, a waiver facilitator that assist many Virginians with disabilities live in their community, I'm confused and angry over the opening of Vanguard Landing.

While I realize people deserve home care options, I believe seclusion and segregation is never the answer. Those two factors are dangerous. If you were to look at the history of people with disabilities, you will find, again and again, a pattern of segregation and abuse. I'm not only referring to physical abuse but corruption of the internal care system that will surely happen in the future.

Why are we continuing to make the same mistakes? Why do the founders of Vanguard Landing think this is best option, when very recently the Department of Justice came into Virginia and said the (secluded) Training Centers had to be closed immediately? Isn't that a heads up to parents that these places are dangerous?

The answer to caring for people with disabilities can be found by studying Disability History.
I invite everybody listening right now to my Disability History presentation on October 21st at 6:30 in Norfolk at Hope House hosted by The Arc of South Hampton Roads.

I believe in small group homes sprinkled throughout our community.
I believe in strengthening home care support so anybody with a disability can live at home.
I believe everybody should live in their community, near or with their loved ones.
Segregation is not the answer. It never was and never will be.

A conversation on my Facebook


Released March 9, 2014
New York Times Documentary: The Men of Atalissa

Produced by Kassie Bracken, John Woo and Dan Barry, "The Men of Atalissa" is the evocative, haunting story of a few dozen men with intellectual disability who lived in an old schoolhouse on top of a hill. For more than three decades, they were an integral part of an Iowa farming community, worshipping at the local churches, dancing at the local bars, working at a nearby turkey-processing plant; they were affectionately known as "the boys." But none of their neighbors knew of the day-to-day abuse the men endured in that schoolhouse on the hill.

The Iowa community had no idea of the abuse going on inside the bunkhouse.
“I’ve been in the building back when it was nice.”
“Never heard them complain.”

Video  |   Article   |    A conversation on my Facebook


Tuesday, June 4, 2013

To explain or not to explain: That is the question

When talking to the public don't explain your disability at great length and then turn around and ask them to treat you like everybody else.
It's a very contradicting message and I would love to see people with disabilities (and parents) stop using this way of introducing themselves.

Your disability is a part of you, but it does not define you. It's not the most important thing about you.

If you start a conversation off with your medical diagnosis and rattle off how or why a disability effects you, I feel strangers will just compile the information into a large pile of CAN'T. You are building your own mountain that you will have to scale. People with disabilities have enough barriers, why create them with words?

A person is much more than their disability. Choosing how you communicate with the public that will convey that. Stop explaining yourself away. Stop self-identifying as a label. 

When meeting a person for the first time, find common ground with them. Friends heighten quality of life. Friendship can form under any shared interest. If the first thing out of your mouth is 'disability', however honest and clear you describe it it will create divide between you and the potential new friend.

Do you hear people say, "Hello. My name is Bob. I have high blood pressure."? No, you don't. Leave the medical labels in the doctors office. Even then doctors can be wrong, or medical diagnoses are always changing, or medical discoveries are made, so why bother trying to stuff yourself into a pre-labeled box?

I used to tell anybody and everybody about disability, in hopes of if people understood then then they would accept. Explaining yourself into oblivion does no good. It takes and leaves you with nothing. It dehumanizes you. There is a time and place to explain your disability.

I do believe in teaching awareness in a careful all encompassing way. 
This disability month, that disability month…. It's starting to really get on my nerves. How much awareness does a person need to be beat over the head with? I'm sure by now, the bombardment of awareness has turned into a dull mind-numbing roar that the public has tuned out. 
Instead of a particular disability awareness plug/PSA, advocate how people with disabilities should be treated. BUT then when doing that, you'll see the disabled community run into this paradox:

"Just like you." 
"Different. It's ok to be different." 
If it's confusing to me, our children must be baffled!

I'm sure we all want to be accepted. We want a space at the family table, so to speak. In that aspect everybody on earth is the same. The truth is we  each have our differences and as humans we are intelligent enough to include everybody.


"As we think so shall we speak, as we speak, so shall it be.”

People First Language is a way of speaking about people with disabilities in a positive manor that does not put disability in the spotlight. Too often the disability takes over conversations when the true focus should be on the person's likes, needs, wants and life goals. The way we choose to speak is so important, because it forms the world around us.
People First Language also changes how we describe assistive devices.
For example: She's in a wheelchair Changes to: She uses a wheelchair.
People First Language may seem like a small thing, but if more people used it attitudes towards disabilities will change for the better. So be sure to try and use it and maybe just by listening, somebody near you will start using it too.

Here's a fabulous webpage that gives more detail about People First Language:


When reaching out for support or advocating for your child, at what point can it be damaging to social perception of disability?

A Facebook chat about two articles:
Paying For My Special-Needs Child
Why We Published A Photo Of A 16-Year-Old In A Diaper


“I stopped explaining myself when I realized people only understand from their level of perception.” 


Stop blaming the disability. Take it off your list as the #1 go to reason when there is a problem.
Facebook chat