Martin Luther King, Jr. Lessons

Emma is a Girl Scout this year - well, technically she is a Brownie. It's her first year of scouting and so far it is a huge hit with her! She loves going to the meetings 2x/month. The meetings take place at her school and there are about 20 girls from her grade in her troop. Chris or I always join Emma for the meeting so that we can help her fully participate but often her fellow scouts take over and include Emma without needing (or wanting) our help.

I wasn't sure how scouting would go for Emma. It's at night after a long day at school and she is usually exhausted at night. I wasn't sure how she would participate in the circle time, crafts and activities with her troop but knew we could modify things on the fly. Since she expressed a strong interest to join we decided to give it a go and I'm so glad we did!

Our last meeting's topics of discussion were the upcoming Girl Scout Cookie Sale (if you need a hook up with cookies or want to donate money to send cookies to our deployed troops, let us know!) and Martin Luther King, Jr. When the leader asked the girls what they knew about Martin Luther King, Jr. it was great to hear that they knew so much about him and others involved in the Civil Rights Movement. Our activity that night was to draw on one sheet of paper Martin Luther King, Jr.'s dream and then on another sheet of paper the girls were to draw their dream. During the activity a snack of Pirate Booty was served.

As is typical, Emma's friends sat by her side and offered to help her draw but Emma wasn't so interested. When I asked her if she had a dream she said yes. When I asked her if it had to do with school, she said no. Did it have to do with play? No. Etc, etc. Finally I asked her did it have to do with food? Yes. Her dream was to have me feed her more Pirate Booty. So funny - so Emma. Obviously, her dream was easy to make come true and it happened immediately.

While we were at our tables I shared with the girls how thankful I am for Martin Luther King, Jr. not only because I love that it ended segregation, but also that the Civil Rights Movement paved the way for the disability rights movement. Many of the protections passed as part of the Americans with Disabilities Act used the Civil Rights Laws as a framework. Until the ADA was passed on July 26, 1990 public accommodations for those with disabilities was not required. I can't imagine how our life would be impacted if we didn't have access to ramps or handicapped bathrooms at public places. Just 25 years ago these things were not commonplace. Today, we do encounter our fair share of challenges navigating our environment with wheels and that is after the ADA has been around for 25 years.

Martin Luther King, Jr.'s dream matters. His dream helped shape the America that we live in today and for that I will forever be grateful.

If I was drawing my dream on the Girl Scout sheets last week, it would be that people with physical disabilities would be able to go anywhere - including places not mandated by the ADA - without worrying that they might not have "wheeled" access. That our worries would no longer be that there might not be a ramp, parking or a large enough handicapped bathroom (no, they are not all created equal in size!), but that our biggest worries would be that we might not have packed enough sunscreen or snacks.

Julia is on roller skates pushing Emma, who is also on roller skates and standing in her KidWalk gait trainer, around the roller skating rink at Emma's birthday party.

Senate doesn't stand up for worldwide disability rights

This week - Tuesday, December 4th - the Senate had a chance to ratify the United Nations treaty on the rights of the disabled.  It is modeled after the Americans with Disabilities act, was drafter under President George W. Bush and is a great step forward for people with disabilities around the world.  It should have been a no-brainer for the Senate to ratify it.  But it wasn't.

Former Senate Majority Leader Bob Dole made a rare appearance on the Senate floor in his wheelchair to try and sway the Republicans to vote Yea on ratifying this treaty.  They did not.  In all, 38 Senators voted NAY and refused to stand up for disabilities rights around the world.  All 38 Senators were Republican with Senator Mike Lee (R-UT) leading the charge and supported by former senator Rick Santorum (who, sadly, hails from my state of PA).  And I can only think to myself that the Republican party is supposed to stand for Christian values yet decided to do nothing for the disabled.  I am happy that in all 8 Republicans - including Senator McCain - did vote Yea to the treaty but that just wasn't enough.

For more information, here is an article from the Washington Post and here is an article on politicususa.

Senator Toomey from PA voted Nay.  I called his office and told him I was not happy with his vote.  Senator Casey from PA vote Yea.  I called his office and thanked him for his support on this treaty.   I encourage others to do the same.  Their phone numbers are:

Senator Pat Toomey:  202-224-4254

Senator Robery Casey:  202-224-6324

Want to know how your Senators voted?  Click this link to see.

And for a bit of perspective, Jon Stewart did a great bit on this issue called Please Tell Me This is Rock Bottom.  As he puts it - "Republicans hate the United Nations more than they like helping people in wheelchairs."

The Daily Show with Jon Stewart	Mon - Thurs 11p / 10c
Please Tell Me This is Rock Bottom
www.thedailyshow.com
Daily Show Full Episodes Political Humor & Satire Blog The Daily Show on Facebook

That about sums it up.  I hope this isn't what we will see for the next 4 years because, after all, we live with a government for the people by the people.  Your representatives vote for YOU.  Make sure you call them and let them know how they are doing with that job.  It only takes a minute.

Preventing Harmful Restraint and Seclusion in Schools Act

As we start thinking about Back to School, I keep thinking about the information I uncovered while researching Senate Bill 2860 - Preventing Harmful Restraint and Seclusion in Schools Act that I wrote about in this post. Did you know that children are being harmed and killed in our schools?  Consider the following incidents.  Please note that I've only provided a few examples from across the country that show how children are not protected at school.  To read the many more examples, you can read what was reported here. Deaths resulting from restraint or seclusion: Michigan: A 14 year old middle school student was killed when his teacher held him down, ignoring his plea “I can’t breathe, I can’t breathe.” Knowing that the student, with a mental illness and other disabilities, was sensitive to food issues because he had been denied food when he was younger, the teacher sought to punish the student for his aggressive behavior by refusing him lunch. When the student tried to leave the classroom to go to the lunchroom the use of deadly restraint by the teacher ensued.Did you know that children are being harmed and killed in our schools?  Texas:  A seven year old girl was suffocated and killed at a mental health day treatment facility when several adult staff pinned her to the floor in a prone restraint. This child, who was diagnosed with an emotional disturbance and Attention Deficit Hyperactivity Disorder, died because she was blowing bubbles in her milk and did not follow the time-out rules regarding movement. Wisconsin:  A seven year old girl was suffocated and killed at a mental health day treatment facility when several adult staff pinned her to the floor in a prone restraint. This child, who was diagnosed with an emotional disturbance and Attention Deficit Hyperactivity Disorder, died because she was blowing bubbles in her milk and did not follow the time-out rules regarding movement. Georgia:  A 13 year old hanged himself in a small concrete-walled, locked seclusion room using a cord provided by a teacher to hold up his pants.  This eighth-grader had pleaded with his teachers that he could not stand being locked within the small seclusion room for hours at a time. The boy had threatened suicide in school a few weeks before his death. Incidents of students getting pinned down, tied up and battered Alabama:  An eight year old boy with autism in the second grade was physically restrained by school staff to manage behavior issues. Arizona:  A five year old boy with autism was repeatedly physically restrained despite his mother’s repeated demands that such restraint be stopped. Arkansas:  Fearful and resisting her removal to the “blue padded room,” an eight year old girl with autism was tied down into a wheelchair by a vice principal who proceeded to wheel the child down the hall and isolate the screaming, terrified little girl in the seclusion room. California:  In a rural school district in California, a ten year old non-verbal boy with multiple disabilities was tied to his wheelchair and left on the school van in the parking lot for hours on two separate days. His wrists were tied to the arms of his wheelchair with components removed from the safety vest used during transport on the van. His legs were bound together at the ankles with a nylon Velcro strap. On an unscheduled visit to the school, his mother was outraged when she found him unsupervised, alone, bound to his wheelchair on the van. Florida:  A behavior tech broke the arm of a boy who has bipolar disorder and autism, while attempting to restrain him. The boy suffered a "spiral fracture to the upper right arm," according to emergency room staff. He was taken to his after school program by a bus aide who told police he cried the entire ride. But she said she “didn't take (the boy) seriously because he behaves this way all the time." His after school program discovered a red swollen arm and abrasions on his face. A teacher not involved in the incident told police she found the boy alone in the classroom, laying on the floor crying. Hawaii:  Discovering bruises on her daughter’s hips, a mother contacted the school where they admitted that the seven year old girl with developmental disabilities and deafness was frequently tied to her chair, her hearing device removed by school personnel, because she would not stay in her seat. The bruises were caused by the strap used to tie the girl down. Illinois:  A mother strenuously objected to her three year old son being routinely restrained in a positional support chair. Her son, who has severe autism and is non-verbal, was restrained by straps in the chair or by utilizing the tray to restrict his movements. After reaching agreement with the school that the positional support chair would only be used for its therapeutic purpose, the parent was dismayed to observe her three year old restrained in the chair again, unattended, and with no school activities being provided to him. Kansas:  A three year old boy with autism didn’t know the rules of sitting during certain times in a publicly funded preschool. After two days the teacher, and the staff decided that he was too much to keep up with, so they put him in a chair intended to provide postural support children to children who are physically disabled. He remained in the chair for varying amounts of time. Often he sat while the other children were playing or doing group activities. All he could do was sit beside the wall and watch. He could not get up because he was strapped in this stiff wooden chair. Kentucky:  A six year old boy diagnosed with bipolar disorder was forced to sit in a partitioned area of his classroom. When behavior issues erupted in the classroom three school personnel, all males, came into the classroom and physically dragged the child out of the school and into a van. He was taken to his therapist’s office so that she could see how “bad” he was. If you want Senate Bill 2860 to pass, please call your State Senator and ask them to support this bill.

History of the Disability Movement - Partners Meeting 1

I mentioned before about the Partners in Policymaking program that Chris and I are participating in this year. It is eye-opening to us and really grounding us in what we want for our family and how to make it happen. I encourage everyone who has a disability or a child with a disability to find out if your state sponsors this program and enroll. It will change your life!

Ok, that is my plug for this program and now I am going to do a series of posts on key learnings from the Partners meetings. This entry will be what we learned in the first meeting which focused on the History of the Disability Movement. We had Guy Caruso and Colleen Wieck (the creator of the Partners in Policymaking program) as guest speakers and they were captivating. I sometimes think history lessons can be a bit dry but this session was anything but dry.

Where to begin......

Whew! This session really lit a fire in my belly. The way people with disabilities were treated in the no-so-distant past made me sick to my stomach - literally!

• Disabled people have been dehumanized, devalued and neglected for most of history. Typical life experiences of people with disabilities is - devalued by society, put into negative social roles, rejected....segregated....and congregated, marked and labeled in negative ways and oppressed....punished.....even physically hurt.
• As far back as in ancient Greece, infants with some imperfection were left outside to die
• In the 1800s in America there was a rise in the use of "asylums", which were institutions where people with disabilities were kept in cages, closets, cellars, stalls, pens! Chained, naked, beaten with rods and lashed into obedience. There was a photo essay on the deplorable conditions the children and adults lived in titled Christmas in Purgatory. The images and descriptions of the living conditions would make you sick. I can't even imagine how those parents felt when the learned what was happening to their children.
• Late 1880s to early 1900s there was a movement to prevent the birth of those with disablities and we saw forced sterilization and the rise of the Eugenics Movement (Breeding for improving genetics). By 1933, 26 states had sterilization laws inspired by eugenics. This movement fell out of favor after Nazi Germany
• 1950s saw the rise of the parents movement. Parents started to question the "experts" when they said nothing could be done for your child and they should be put away. The parents banded together and started to advocate for laws that improve education, rehabilitation and civil rights for their children with disabilities. By 1950 there were 88 local groups in 19 different states and they went by the name National Association of Parents and Friends of Mentally Retarded Children and are presently known as The ARC.
• In the 1960s some money was designated for services for the disabled when JFK acknowledged his sister Rosemary.
• In the 1970s deinstitutionalization began and the focus was put on the creation of community services. This was done largely in part from the influence of Wolf Wolfensberger who was an incredible advocate for the disabled. He was influenced by the inclusive society in Scandinavia and wondered why we couldn't be more inclusive in the USA and set out to change our policy.

Ok, let me take just a minute and say that I was born in the 70s. This is NOT ancient history. That people were treated this way in my lifetime still takes my breath away. Additionally, there are STILL institutions in existence today. We even learned of at least 1 lawsuit from this year - 2010 - about people being kept in shackles in institutions! We still have a LONG way to go for people of all abilities to be included properly in society, but there is hope. And the parents movement was successful in making some major changes and laid a solid foundation for our generation to continue to Disability Movement and fight for the rights of our loved ones.

Parents drove change. The Civil Rights movement paved the way for the Disability Movement and the Disability Movement leaders worked with the Civil Rights leaders to start making changes.

• In 1975 the Individuals with Disabilities Education Act (IDEA) was passed. This is the first major legislation to require all school districts to develop and provide a free and appropriate public education (FAPE) for all children and youth with disabilities. Prior to this act, children with an IQ lower than 55 were not allowed to attend public schools.
• People with disabilities started to move into group homes and attend special education classes (more on each of these topics later in the series)
• Ed Roberts founded the Independent Living Movement
• 1990 the Americans with Disabilities Act (ADA) was passed which prohibits disability discrimination by public entities. This is one of the most significant civil rights documents of the 20th Century!
• 1998 Assistive Technology Act passed.

Now, that is a lot to digest. We spent 2 days on this topic and I know I'm not doing it justice in this one post but hope that it brings the Disability Movement and the timing of it to the forefront of your mind.

I leave you with this quote from Ed Roberts -

Disability is an equal opportunity club and any one of us can join on any given day.

Please Support Senate Bill S. 2860

I've been doing quite a bit of reading on education and came across a post at The Wrightslaw Way regarding a restrain/seclusion bill that the House of Representatives passed and is now in the Senate for approval.

The bill - H.R. 4247 for the house, S. 2860 for the Senate - addresses the issue of restraint and seclusion in our school system. According to the Council of Parent Attorneys and Advocates, roughly half of of all states provide little or no protection against restraint and seclusion. The result is that each year hundreds if not thousands of students are abused in school, resulting in trauma, injury and death. Passing this bill will requires states to set a minimum standard to the federal law on restraint and seclusion.

To learn more about this bill, please look at this blog post that gives more information around the bill, what opponents of the bill are saying and why it is so important to all our children - with and without disabilities - to ensure this bill is turned into law.

For our children that are not verbal and cannot tell us what is happening in schools, it is imperative that they have protection against abuse. Please contact your senators and ask them to vote FOR bill S. 2860. Then, please ask your family and friends to contact their senator so we can get this bill approved and protect our children.

Thank you for your support!

Disability is Natural

Chris and I have been spending one weekend a month since February at the Partners in Policymaking meetings I discussed on this blog post. The experience and the knowledge gained at these meetings are life changing. Really. It's that powerful.

I will do some future posts on learnings from these monthly meetings that I want to share with everyone. Today, though, I want to focus a bit on what was discussed this month: Disability is Natural. Our guest speaker from Colorado, Kathie Snow, presented this subject from her experience as a parent with a son that has cerebral palsy and was educated in an inclusive environment. Please know that I couldn't possibly do her 3 hour presentation much justice at all in this brief blog post, so please check out her website found here that has loads of thought provoking articles and website resources to explore.

Mrs. Snow's presentation centered around the concept that there are two worlds: Disability World and Real World. The Real World is what typical children would do at any given age and she contrasts that to what children of the same age are doing and what is expected of them. She presents the concept that we need to give our disabled children the same opportunities as our typical children - to have time to make friends, be included in a typical classrooms, go to birthday parties (where therapists are not the only "friends" in attendance!), gain independence, held responsible for age-appropriate activities, etc. Basically, to be included in real world activities.

In contrast, Disability World is a place where people are judged by the medical diagnosis and everyone is working to "fix" it. The child gets the message that they are broken or something is wrong with them and often is hurts their self-esteem and results in learned helplessness. The thing is, people with disabilities don't need to be fixed. Disability is a natural part of the human experience and we should learn to embrace in general society people with disabilities.

People with disabilities don't need to be labelled and segregated out. Separate is NOT equal. But yet, children with disabilities are usually separated out into special education classes (and special sports teams such as Special Olympics, etc.) without even given the opportunity to be included in typical classrooms. They can only place out of special ed when it is deemed they are "normal enough." The caution from Kathie and many of the other speakers and those in the program that are disabled adults that went through the special ed system is that it is VERY EASY TO GET INTO the special ed system/classroom, but VERY, VERY DIFFICULT TO GET OUT of that classroom. It is much, much better to start out learning in a typical classroom with appropriate supports.

Consider that regardless of the large amount of time children spend in special ed (usually up to age 21) and the money spent by the government to support these programs, the unemployment rate of disabled children who go through the system is >75%! At the end of the special ed road, parents and educators are often working towards the goal of getting the child into a group home instead of their own apartment. In group homes people are put together with relative strangers they have to live with. They have goals written down that they need to meet - such as making your bed within 20 minutes of waking up, having food dishes washed and put away within 30 minutes of finishing meal, etc. Who the heck wants to live to this standard? I often go without making my bed at all and am just FINE with that!

I don't want to start down a path that considers it a success to have my child living with strangers not of her choosing, in a place with rules that I don't want to live with, and to a life of poverty living off social security disability insurance. And, so, what Kathie presented really got to me. I didn't get much sleep that night thinking of how this talk applied to our life and what is possible for Emma. Chris and I want Emma to live in the Real World and NOT in Disability World. So, now we have to figure out how to navigate the road of school starting in a few months and know that we have a strong voice in Emma's placement. And while we know that the path will be a continuous work in process, the one thing that is certain is that we will exercise our authority to deny many of the "assessments" that well-intentioned people want to give to our daughter that will result in more labels. This includes IQ tests. I can honestly say that I find NO value in IQ tests and will not agree to any such test for either of my children. Other than that, we still have a lot to figure out and I feel extremely lucky that we are participating in Partners in Policymaking while Emma is young.

You just have to ask

Today is Friday which means Field Trip Friday for us and since the Delaware Children's Museum was such a big hit last week we decided to go there again. We ran into a few friends there which was a great surprise and the girls just had so much fun playing with them. I found some more ways to have Emma interact with the exhibits and she kept squealing with delight. I just love when that happens :)

When we were leaving I spoke with the front desk staff. I handed in my feedback form and started to talk abut the water exhibit. Before I could say much, she told me she remembered me from last week and that she had spoken with the museum director and everyone TOTALLY AGREES that they want to make the water exhibit available to children in wheelchairs. They are already discussing possible options to make this happen.

How cool is that? I'm so excited that Emma will eventually be able to use this exhibit without total assistance from Mom or Dad. I know she loves having us around but she is exerting an independence streak whenever possible and anything she can do on her own without Mom and Dad participating in 100% is a fantastic activity in our book.

Thanks, Delaware Children's Museum for having such an inclusive mindset!

Partners in Policymaking

Our state is sponsoring a program titled: Partners in Policymaking - a Leadership training project of the Developmental Disabilities Council. Sound interesting? Well, don't let the title put you off as I've heard from others that attended the sessions that it is life changing. Since programs sponsored by the state rarely get that kind of review we decided to check into it further.

According to the literature, Partners in Policymaking (PIP) is an innovative leadership training program that teaches people to be community leaders. It is designed for parents raising young or school-aged children with a developmental disability. PIP provides up-to-date information, education and skill building activities about the legislative process ad local, state and national issues that affect individuals with disabilities. Graduates gain the abilities to teach policy makers a new way of thinking about people with disabilities.

Ahhhh.......now this is a program I can get behind 100%. And since we are rapidly approaching aging out of the state's Birth to age 3 program, it is timely for us to find out about this program. Chris and I applied and are so happy we were accepted!

The program is great in that it is free - which meets our budget requirements! It includes lodging and meals, reimbursement for travel mileage to and from sessions, and reimbursement for respite care (this has an * in that it is determined on an individual basis). It is held over eight, two-day sessions from February through September with each session beginning on Friday at noon and ending on Saturday afternoon. There are also assignments to complete between sessions.

PIP was developed by the Minnesota Governor's Planning Council on Developmental Disabilities and has been offered in 40 states training over 5,000 people nationwide. PIP trains and educates Partners in:

• History of the Disability Movements
• Inclusive Education
• Community Supports and Supported Employment
• Vision for the Future and Planning Process
• Assistive Technology
• Local, State and Federal Policy and Legislative Issues
• How to meet Public Officials and give Legislative Testimony
• Community Organizing
• Working with the Media
• Holding effective meetings
• And more!

We're excited to participate in this program and report out on all the great stuff we plan to learn :-) The first session is in a couple of weeks and...................YES, I am shamelessly looking forward to an uninterrupted (I hope!) night of sleep in the hotel.