Posts Tagged ‘disability rights’

The Bigger Picture

I cried several times yesterday after hearing from a friend who has a young daughter who lives life with multiple disabilities. The young girl attends public school and is in a program that educates her in a special education classroom part of the day and then includes her in the general education classroom part of the day. How’s that working for her? Well, unfortunately, my friend received news that it is somewhat of a fail, apparently.

Inclusion. It means different things to different folks. To some it just means sharing the same location or the same room. To some it means visiting now and then. To some it means sneaking in the door occasionally, grabbing the closest desk to the door, and sitting there for a few minutes. To some it means allowing a student to participate in PE or music.

To me, inclusion means to be a part of the class. Not a visitor. Not a “friend from down the hall.” ¬†Not the Inclusion Kids.

Inclusion means to be a member of the group. Equality, inclusion.

I received Chloe’s class picture yesterday. I spent nearly ten minutes looking at it. Looking at Chloe, sitting a little awkwardly next to the teacher, and noticing she’s not the only one who appears a little awkward. ūüėČ Looking at the teacher who truly adores and values my daughter. Looking at the girls — self-proclaimed friends of Chloe. Looking at the boys and the principal who all just accept Chloe as another one of the girls. Looking at Chloe’s aide who believes in Chloe and is only surprised when Chloe doesn’t succeed on a task. Looking at the class. The group. And knowing Chloe is a part of the group. I couldn’t stop looking.

It made me think of years past when Chloe wasn’t in the general education class photo. I remembered the years when I was surprised when I received Chloe’s class photo. The photo wasn’t what I expected. Chloe and six or eight other kids who receive special education services appeared in a tiny class photo with each other — set apart, segregated, separated, symbolizing how the school truly felt about them … about her. Knowing that the other girls in Chloe’s grade were taking home a completely different photo that didn’t include Chloe.

But this year is different. This year she is included. This year she is truly part of the group. And I couldn’t stop looking at the photo. I loved it. It warmed my heart and made me so thankful — so thankful for the teachers, the aide, the staff, the principal, everyone who has worked hard to make sure that Chloe is a part of the group. I was thankful.

Literally not an hour later, I heard from my friend who gave me the news that broke my heart. Her young daughter, who on paper was “included,” as it turns out was not truly¬†included. She was not¬†a part of the class.

It seems that on class picture day, the general education teacher asked the special education teacher if her class could take a photo with my friend’s daughter and a photo without her. ¬†And so it happened that a photo was taken with her, and then (again symbolizing the teacher’s heart for “inclusion”) a photo was taken without her — a more accurate photo of her class.

And to make it worse, my friend’s young daughter heard the whole thing and was aware that she was left out of one of the photos.

To be honest with you, I hardly even know this friend’s daughter. I’ve only been around her a handful of times. Why in the world did I cry as much as I did if I hardly know her?

I think the answer is that when you believe so hard in something — like equality and inclusion and dignity for individuals who have a disability — and then you see it so totally fail … it tends to absolutely crush your hope. That blow means we are still so far away from reaching inclusion, from reaching a society that accepts my daughter and accepts my friend’s daughter.

I was crushed. I cried again later as I told Paul the story of the two class pictures.

Having so little hope, where do I go from here?

I pray that this teacher … and other teachers who are still completely in the dark about what it means to include a human being simply because she’s a human being … would be changed. I pray that something would happen to change them.

I know my advocacy and my speaking up will help with some change. I have dear friends who are speaking up with me and advocating with me. We will make our voices heard. But we are so few … and stories like this make the effort seem utterly hopeless.

I really want this world to be different for my kids!! I want it to be different for my grandkids!

My heart hurts — literally aches — from stories like this one. But I have to believe that my/our efforts will pay off. They will make a change.

I have to believe it. I do believe it. I believe that change can and will happen. I believe that situations and hearts and beliefs will change.

It happens. It sometimes happens. Doesn’t it?

Yes, it does. In fact, I have Chloe’s class photo to prove it!

ChloeClass2013

I will continue to fight and advocate and speak up. And if I have to look at Chloe’s class photo everyday as motivation, then that’s what I’ll do!

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Wanting Community

I think when most people think of institutions for people with disabilities, they assume that institutions are really a thing of the past. In the olden days, parents of a young child with a disability were advised to send them away to an institution. Surely that doesn’t really happen anymore — we’ve come so far.

If most people stop and realize that these institutions really do still exist, they probably imagine the conditions there being much-improved over the old black and white photos that we’ve seen from decades ago of mostly-naked, malnourished people sitting in the corner of a plain concrete room with other mostly-naked individuals, curled up into balls and rocking back and forth.

However, as I have learned the last couple of years, these institutions do still exist. And parents still send their children there. And from what I’ve learned, the conditions have sadly — tragically — not improved much.

(I should note here that I’m talking about Texas’ institutions because those are the ones I know about. I’m unaware of ¬†conditions in other states; but I would unfortunately have to guess that all state institutions lack a standard of care that would meet your/my approval! I know, too, that 13 states no longer have institutions.)

You may know them by the name “state school.” In Texas today they’re actually called State Supported Living Centers or SSLCs. And the state of Texas still has 13 of them. In fact, in Texas, living in an institution is the only entitlement a person with a disability has. Yes, there are some programs that enable the person with a disability to receive Medicaid services and also some community supports, but there is a years-long waiting list for these services. Like literally an 8 to 10 year wait list! They are called “interest lists” and there are many, many people waiting… waiting for the services and the medical coverage that they need in order to stay in the community, stay with their family. (See this link for the actual numbers of people waiting.)

If the family of a person with a disability cannot afford to pay for the care of their family member, and their loved one’s name has not yet come up on the interest list, then the only choice is for that person to be placed in an institution.

And Texas’ SSLCs are notorious for abuse and neglect. What more would you expect from a setting that is totally segregated from society, having its own medical facility, etc. Closed and locked doors. Residents who can’t report the abuse; “professionals” who don’t take the residents’ complaints seriously. It’s easy to get away with abuse and neglect in that setting. No eyes. No ears.

And to make matters worse and more complicated, it actually costs the state (and its taxpayers!) way more money to house an individual in a SSLC than to support them out in the community.

So over and over and over the abuse goes unreported. And even when it’s reported — even when it’s confirmed — nothing is done about it. Abusers go unpunished — and even keep their jobs!¬†Doors remained locked. And money is poured into the management of these institutions to keep them open and running, housing our most vulnerable citizens.

Can you tell it’s a soapbox?? Can you tell it makes me crazy?

It does.

And that’s why our family decided to make our voices heard at a recent rally at the Denton SSLC, formerly the Denton State School. CommunityNOW! along with some other organizations organized the rally/press conference¬†and invited the public and the media to attend.

The rally was scheduled for the 10-year anniversary of the horrible abuse of a young resident: Haseeb Chishty. Haseeb was horribly abused in the Denton facility, and his life is forever altered because of it. He now lives at home and receives constant care from his family. And nothing has been done to date about the abuse Haseeb received.

So Paul, Elliot, Zippy, Chloe, and I joined with other concerned citizens, holding signs for the passersby to read. We heard people speak up about never wanting to be placed in an institution… they instead want their community services to remain and increase. We heard people explain the importance of speaking up to our legislatures about change. And we called for the closure and/or downsizing of all of Texas’ SSLCs.

And we were a part of it. All 5 of us. Because it’s important to us. Because it is very close to us. Because hopefully our 5 voices joined with all the other voices will finally be heard and will be a part of bringing about justice and bringing about change.

And we will be able to say that we were a part of that movement. And we will celebrate!

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Challenged by the Norm

I must admit here that I oftentimes crack myself up with my titles that probably most of you don’t even notice. This title is no exception. I’m thinking it’s pretty clever.

Norm Kunc.

If you’ve never heard of Norman Kunc, you should stop now and google him. You should go to youtube and search his name. You should go to his website. He is so not-the-norm. And I was recently challenged by him as I attended two workshops where he was the presenter.

The day started with a talk at a local library. Norm told part of his story: he was born with cerebral palsy. His family was encouraged to put him in an institution. But his mom chose to take him home. He attended a special school for disabled children until he was in 8th grade at which time he transferred to a regular public school. He went on to graduate from public school. He continued on to graduate from college and later received his Master’s degree. He is married and has children. He owns his own business. He travels internationally as a public speaker. His disability does not prevent his living and enjoying life.

His story is remarkable … inspiring. He challenged us about the all-too-common act of helping others (especially those with a disability) out of benevolence and out of a need and desire to help others. So many times helping other people makes us feel better. Sometimes helping is for us instead of the person we are helping.

Norm presented to us that perhaps the person with a disability doesn’t even want our help — maybe doesn’t need it. Sometimes stepping in to help shows a lack of respect and steals the person’s dignity. Perhaps it would be more of a help to him/her if we just left them alone, gave them space and time to complete the task themselves.

It’s a new way of thinking for me. For so many who attended the workshop.

Norm Kunc was funny, entertaining, challenging.

That night I attended a dinner where he presented the keynote. He talked more about his story. He told about the reason why inclusion of individuals with disabilities is so vital and why it is so personally important to him. Not only did the decision to include him in general education beginning in grade 8 change the course of his own life, but he told of 2 of his classmates who were also moved to a general education setting at the same time. Norm and these other 2 students went on to live very successful lives: college, marriage, children, success, happiness, fulfillment.

But he told of a 4th classmate from his special school whose parents made the decision not to transfer¬†to general education. Norm said this student’s parents were scared of trying to include her in a regular school. She stayed in a segregated setting for her schooling. And as a result, her life went very, very differently than Norm and those other 2 students. This other classmate “graduated” from the special school and didn’t have the experience or skills or diploma to get a fulfilling job. This other student lived with her parents her whole life; this other student never experienced a romantic relationship, marriage, or having children. This other student led a very secluded life, and her life was ended early as her parents in an act of desperation and probably deep depression killed her and themselves.

A very eye-opening comparison. I and several other attendees gasped as we heard how this other student’s life ended.

I don’t pretend to think that this other student’s life story is how all stories end for students who are not included in society. Thankfully they don’t all end in that degree of tragedy. But it sure paints an amazingly sober story! What a comparison. What a tragedy.

The night really could’ve ended there. The story of “that other student” was enough to send all of us attendees out to conquer the world. But Norm went on to present the idea of the problem of disability not being in the lives and bodies of those individuals living life with a disability; instead, the problem is with our society. The problem is in our society. It’s society’s problem. Building a ramp to enable a person to gain access into a building is not just a nice thing to do. It is a way that we as a society have to attempt to fix the problem we have created — a building with an unaccessible flight of stairs. As a society, we act surprised and shocked and disappointed and fearful when someone has a disability. We need to recognize that disabilities are a natural part of life. There will always be disabilities. Whether people have those disabilities from birth, after an accident, or with aging. The problem is not within the disability … the problem is in how we respond (or don’t respond) to the fact and the presence of disability.

Norm Kunc also pointed out that his disability doesn’t limit his life. He challenged people who feel sorry for him or think of his life as less — less fulfilling, less meaningful, less fun, less important. Instead, he pointed out with humor that he’s glad he’s not ordinary! He wondered why people would even think that he wishes to be ordinary. He is happy; he is fulfilled; he is successful; he is loved; he is amazingly inspiring; and he has a disability.

We all really did leave that meeting feeling like we were ready to go out and change our world! We were so intrigued and inspired and encouraged. I have heard several people who attended that night say they didn’t sleep for thinking of the ideas that Norm had stirred in us.

But I was left wishing that many more people had been there to hear Norm. The truth is, he was talking to a roomful of folks who already agreed with him. I was wishing the room was bigger … and fuller … and that our society was getting more enlightened by Norm’s words.

I am honored to have been able to listen to Norm. What a day!

Again, I encourage you to peruse his website and read all you can. And certainly if you ever get the opportunity to attend one of his speaking engagements, go, Go, GO!

Annie’s Coming Out (the book)

Annie's Coming OutI recently read the book Annie’s Coming Out and was challenged and educated and stirred. The book is about a young girl, Annie who was born in Australia in the mid ’60s, diagnosed with cerebral palsy/athetosis, and sentenced to a life in an institution for mentally retarded children.

To think how recently ago children with less-than-perfect bodies were nearly-across-the-board placed in institutions is harrowing. I know that there were still a few families that chose to keep their children at home, but most saw institutionalization as their only option. Most were told by doctors that the child would be better off in an institution. Once dropped off at the door of the institution, a lot of the children never saw their families again. Some only saw their families once or twice a year.

The book Annie’s Coming Out paints a pretty nasty picture of life in an institution — cruel treatment; starvation; no stimulation; no conversation; no touch; no music or toys; nurses and caregivers who didn’t care or understand; tiny, helpless lives stuck in a void and an emptiness and a cruelty by a bureaucracy and society that is blind to their own repulsive actions.

While our society today is not as quick to drop off a child with different abilities in an institution, it is a practice that still occurs certainly.  And I have heard that perhaps the living conditions in these institutions has not made a ton of improvement.  It is a sobering thought.

Thankfully for Annie and several other children who had spent their lives in the institution, a wonderful teacher came along and believed in stimulating them.  Rose, the gifted teacher, admits that she had no idea of how bright the children were before she started teaching them, but she saw it more as a right that they had to be spoken to and stimulated.

What follows is an amazing story of unlocking the communication of a few of these children.  These children who had never in their lives been able to communicate with another person were finally supported enough to be able to communicate to Rose.  What she learned was that some of these so-called mentally retarded children were extremely bright, able to learn to read and do complicated math and understand politics and law!

The power of communication is a great emphasis of the book.  For it is communication that made the difference for these children.  Communication brought life to them . . .  brought purpose for them . . . brought the ability to dream to them.

Rose’s efforts with and on behalf of the children were far from supported by the bureaucracy and the governmental authorities. ¬†Society was so set on pushing these seemingly worthless children aside that they could not begin to accept the fact that they were perhaps intelligent beings. ¬†Everyone in authority tried to shut Rose down and keep her from educating and communicating with these children.

Through the book, Rose grows close to Annie and to a couple of the other children.  She takes a couple of the children home for the weekends and exposes them to real life outside the bland walls of the institution for the first time in their lives.

And the second half or so of the book is the story of Annie’s legal battle to become free. ¬†Annie wants more than anything to be free from the institution. ¬†She endures much hardship and several court battles to basically earn the right to be human — the right to live her own life and to make decisions for herself.

The book is a pretty easy read, only about 250 pages.  And it is certainly eye-opening and telling.  I recommend it to anyone who loves or is interested in supporting someone with intellectual or physical disabilities.  You can find the book at Amazon.com here, but it is not really a widely-available book.

The book was later made into a movie. ¬†Paul and I will watch it in the next couple of weeks and will let you know our thoughts on it. ¬†Let me know in the comments if you read Annie’s Coming Out!

Including Samuel

As most of you know, it is important to our family that Chloe be included in life, in society, at church, and at school just as typical children — those without any disability — are included in life. ¬†While it may sound like an easy thing, the truth is that being included in life, in society, at church, and at school is something that a lot of people do not have. ¬†If you are living life without a disability, ¬†the truth is that you probably just take it for granted that you and your children are included in life. ¬†A privilege? ¬†A right? ¬†I believe it is a right that everyone should have — everyone with and without a disability. ¬†I believe it’s Chloe’s right to be included.

It has been called the last civil rights issue — people with disabilities fighting for their rights to a life of value. ¬†And I believe that it is true. ¬†People with disabilities unfortunately often have to fight for their right to be included in life. ¬†Our family knows this issue quite closely. ¬†We live this issue everyday, actually. ¬†It is an important issue, an important fight. ¬†And it’s worth fighting for.

Paul and I recently gathered with fellow parents of children with disabilities and others who love someone with a disability and watched the documentary Including Samuel. ¬†It was my 2nd time to see it. ¬†It is a powerful video. ¬†It is eye-opening and challenging. ¬†It is thought-provoking, to be sure. ¬†If you’ve never seen the film, I highly recommend your finding a copy and watching it. ¬†It really sheds an honest light on inclusion in schools — its challenges, its rewards, the importance of doing it right. ¬†Paul wrote a review of Including Samuel on his movie review blog, and he said I could share it here. ¬†Enjoy!

Last week I attended a screening of Including Samuel with Kelly and Elliot.  It was shown at a local elementary school and moderated by our friend Jennifer, who has attended ARDs with Kelly and assisted her tirelessly with paperwork and ARD preparation.  Including Samuel addresses the challenges of including children with disabilities in mainstream classrooms, a topic that is near and dear to us as we have struggled to get Chloe placed at school.

Samuel is the son of photojournalist and filmmaker Dan Habib.¬† When Samuel was diagnosed with cerebral palsy, he was forced to face the issue of inclusion, a topic about which he hadn’t thought much about before.¬† Habib follows Samuel’s progress, as we see Samuel interacting with his peers at school and participating in the regular education classroom.¬† The Habibs are fortunate to live near a school whose philosophy of full inclusion accommodates students of varying levels of disability in a single classroom.

Samuel interacts with typical classmates.

Besides Samuel, we meet hip-hop artist Keith Jones, an inspiring adult with cerebral palsy who has not let his disability prevent him from a full life, including working as a music producer, marrying and having children, and functioning independently.  He says the best thing to have happened to him was to be placed in regular education classes, not segregated classes.  Other individuals featured in the film illustrate the clear benefits of full inclusion for both the disabled and their typical peers.

Keith Jones–one inspiring guy!

Habib doesn’t try to sugar coat the difficulties that arise with inclusion. ¬†In teacher interviews, we see the range of opinions and emotions, from Samuel’s teacher, who believes that full inclusion is the best way for¬†all¬†¬†children to learn, regardless of speech or mobility problems, to the mainstream teacher who tearfully describes the challenges of reaching both the superbly gifted and the profoundly disabled at the same time. ¬†As one teacher points out, however, the danger of creating separate classrooms for disabled children is that if there is a separate classroom, it¬†will¬†be used, needed or not.

Given our experience with schools which have not practiced inclusion, this quote hit way too close to home: “Inclusion is an easy thing to do poorly. ¬†When we do it poorly, we become convinced that it cannot work.” ¬†Even when one parent or one teacher promotes inclusion, a simplistic approach of placing a child with disabilities in a mainstream classroom without adequate support or appropriate modifications can lead to failure. ¬†I fear that in many schools, poor execution has led to suspicion or outright rejection of full inclusion.

While Including Samuel does not provide all the answers, the film does a great service by raising lots of questions, and, most importantly, raising the possibility that full inclusion can and does work.

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