Posts Tagged ‘Disabled’

Making Way

Chloe and I had an experience this week.

We are in Colorado for a week on vacation.

Earlier this week we rode the cog railway train up Pikes Peak. After the hour train ride, Chloe and I waited in line to potty. It was a long line, sticking out into the shopping area. We waited in line behind a group of teen girls — maybe 13 years old. I didn’t notice them paying us much attention while we waited.

But as the line made its way into the restroom, I noticed the teen girls turning around facing us, getting our attention. It ends up that they were motioning us toward the open accessible stall which was empty. They were motioning us to go ahead of them into the accessible stall where there was room for Chloe’s wheelchair.

I tried to hide my shock and near-confusion as I thanked them profusely and pushed the wheelchair into the stall.

I have never experienced anything like it. Most people wouldn’t even clue in that a person behind them would have to wait until the accessible stall was available! Much less would a person let someone cut in front of them in a long line at the restroom.

Maybe I’m over-reacting, but this restroom experience filled me with hope. Hope for our future — for Chloe’s future. These girls who weren’t much older than Chloe, didn’t feel the need to stare and feel weird in front of Chloe. But they noticed her, sensed her needs, and met those needs to the point of making a personal sacrifice (arguably small) to accommodate her.

Wow. I’m truly touched. I really am.

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When Inclusion Works

As you know by now, I really believe in inclusion. I think inclusion is nearly always best! I agree that there are times — very much the minority, in my opinion — when full inclusion is not what’s best for an individual with disabilities. But most of the time, I am a strong proponent for inclusion. I think it’s best for the individuals who live life with a disability and best for the rest of the world — sometimes especially beneficial for those without a disability. It is a win-win, in my opinion, most of the time. (No secrets here … you already knew that about me!)

I have also mentioned before the ironic and terrible issue of people with disabilities oftentimes not being welcomed in church. I know it sounds awful, but churches are not real open to someone who may disrupt the service or the flow or the peace of their Sunday morning for the most part. Most families who have someone who has a disability just do not go to church. Crazy, right?

Thankfully, my church is the exception. (And again, I think the number of churches open to those who have disabilities is growing. Thank God!) We have had a great experience with our church as a whole and with the children’s department at our church.

The people at our church know Chloe and accept who she is and how she operates. They appreciate her. They talk to her. They let her hug them or ignore them, whichever Chloe happens to do on any particular day. They enjoy it when she dances in church. And they are okay with her choosing a lap to crawl up into.

In the children’s ministry area, each Sunday, there is an older elementary or junior high girl assigned to Chloe. That helper is to keep her safe and help her stay on task during the service. That helper sits by Chloe during the lesson and helps her participate. Oftentimes, it’s that helper who dances with Chloe during worship. It’s that helper who redirects Chloe when she needs it. And it’s that helper who alerts an adult if Chloe has a need that requires an adult.

Mostly, the people at my church aren’t surprised by Chloe. Mostly, no one is uncomfortable with Chloe. Chloe fits in and people move over and allow her space to participate.

The amazing difference that Chloe’s being included in this part of society is making really came to fruition one Sunday when a family visited our church for the first time. This family had a daughter who was close in age to Chloe. While their daughter had a different diagnosis than Chloe, she presented in many similar ways to Chloe. Their daughter is mostly nonverbal; she needs support when standing and walking; she might tend to wander if not reigned in a little. By the time we got to church that Sunday, a couple of the older girls had stepped in to be this new girl’s helpers. These helpers weren’t scared of this new girl; these helpers didn’t have to stare or laugh at this new little girl; the adult volunteers weren’t at a loss of how to minister to this family. It was very easy and very natural for our church to step in and support this new little girl and her family.

And it was all because of including Chloe. Since they have been including Chloe so beautifully and successfully, it was natural and easy for them to reach out to this new family.

Knowing how going to church can be with a child with disabilities, I am sure that this new family was thrilled and surprised and blessed that their daughter was so easily accepted and cared for.

And it was one of the happiest days of my life. Really.

And it reminds me that the more our children are out and about, the more society will accept them. The reason people get nervous around folks who have a disability? It’s because they’re not used to being around folks with disabilities. Plain and simple.

But if they’re regularly around folks with disabilities? Well, then, it’s no big deal.

Will effectively ministering to all of these families who have disabilities take time and practice? Will it take lots of support and volunteers? Yes, it will.

But I’ve experienced it. And it works.

Praise God! Let all families who have a child with a disability praise God, too, if they choose to!

(BTW, I used the example of a child with a disability in this post, but another huge hole in the church is accepting and ministering to adults with disabilities. The same sort of plan would work for that population, too. Again, the more they are out in the community, the more the community gets accustomed to supporting them. It could prove to be a lovely circle of effects!)

{Do you have stories of how churches have done well or not done so well in this area? I’d love to hear about it!}

International Day of Acceptance

I am bogged down with emotion as I prepare for another meeting with Chloe’s school today. My heart, my resolve, and my brain are all very tired and stretched thin. I would love your prayers today if you think about us.

Today, January 20th, is International Day of Acceptance. I was going to attempt to write a wonderful post about what this day means to me and to my family this year. But, as I said, I’m a little emotionally-spent right at the moment.  But in re-reading my post from last year, I have to concur that that is what International Day of Acceptance means to us.  You can reread it here.  🙂

We all have our Wheelchair Heart t-shirts to wear today — even my dad has one to wear this year!

Today we are celebrating and embracing Zachary just the way he is … for it is his disabilities that make him who he is  … that make US what WE are.  And the more I can educate the people around us on his hidden disabilities, the more he will be accepted and embraced and empowered.  Really.

Today we celebrate Chloe just the way she is. . . for it is her disabilities that make her who she is.  She is a strong girl with a perseverance that just won’t stop.  She has a tender heart that has room to love a million more.  And the more I can educate the people around her the more she can live her life to the fullest without being held back or pitied.  For it is pity that will slam on the brakes to her success.

I wear my t-shirt proudly today.  I’m very proud to have Zach and Chloe in my life.  I’m very proud to be a part of the disability community.  I’m very proud to have many friends who live life with a disability.

Educate. Embrace. Empower.

(Again, read last year’s post here.)

Giving Up

I had a sobering conversation with a friend recently.  He told me about a friend of his who has a child with a disability.  They had talked a little bit about my fight for inclusion for Chloe and the troubles that we face in that journey.

Not surprisingly, that journey was not unfamiliar to my friend’s friend.  She knew that journey well from walking it with her now-grown child many years ago.  But it was her words that made my heart hurt deeply.

“I gave up,” she admitted.

She had tried to fight the fight.  She had tried to rally the troops.  She had tried to educate and inform.  She had tried to advocate.  But she finally just gave up out of pure exhaustion.  She was spent, and she was done.  And she gave up nearly 2 decades ago.

“I finally realized that I was the only one who cared,” were some more of her painfully honest words.

<sigh>

She didn’t have the comraderie that I have today.  She didn’t have the ease of research and availability of support and information.  She was a pioneer.  And I think she was a brave one.  She tried.  And I salute her, and I thank her, and I mourn with her.  For her and for her child.

Do stories like hers make us falter and decide it’s just not worth the fight the tears and the stress?

Or do stories like hers strengthen us, adding to our resolve and our stamina?

While her story made me so sad and her words have invaded my thoughts often since that conversation, I think mostly I have added my friend’s friend and her grown child to my list of reasons to keep up the fight.  To keep on educating and informing and fighting for the rights of people with disabilities – namely my 9-year-old daughter.  For, ultimately, it is, of course, all about Chloe and all for Chloe.  But the truth of the matter is that every victory won for Chloe, every right that benefits Chloe, affects a whole group of individuals who are fighting for their rights.  And I am proud to be advocating for them . . . for her . . . for him. . . .

Inclusion Works 5

My first vlog!  Be sure to tell me what you think!

Inclusion Works Conference 2011, Austin, Texas.

The Least Dangerous Assumption:

Outing the Prejudice: Making the least dangerous assumption
By Zach Rossetti and Carol Tashie

People with disabilities are people first. Because of the presence of a disability, a person may act, get around, look, dance, smile, read, learn, show what she knows, or communicate differently. The key here is that this is a difference and not a deficiency. As humans, we are all alike only in that we are all different. The fact that society tends to create a hierarchy of these differences, by labeling some of them deficiencies, is a manifestation of an out-dated paradigm plagued by prejudice. This inherent prejudice against people with disabilities means that some differences will be defined as deficiencies and looked down upon by all of those “higher up” on the social ladder.

What makes this even worse is that most people do not even recognize this prejudice. It is disguised as compassion and justified as “help.” The segregation of people with disabilities into “special” classrooms and separate lives is justified by this paradigm of deficiency. Too many people continue to believe that, “since they do not look or act like us, they must not be as good as us.” This way of thinking needs to be outed, challenged, and changed in order for all people to be valued just as they are.

Anne Donnellan, in her book Movement Differences and Diversity in Autism- Mental Retardation: Appreciations and Accommodations People With Communications and Behavior Challenges (1994), identified why this old paradigm was not sufficient and needs to be replaced by a more humanistic and respectful one. The key to the new paradigm is the concept of the “Least Dangerous Assumption.”

“Least dangerous assumption” states that in the absence of absolute evidence, it is essential to make the assumption that, if proven to be false, would be least dangerous to the individual. She continues by explaining that the “absence of evidence can never be absolute evidence of absence,” and as such, it is always safest and most respectful to make the “least dangerous assumption.”

Consider it this way. If I were to go fishing for a week and not catch anyfish, there would be two assumptions that could be made. First, I could say “there are no fish in the lake since I did not catch any, and I know what I am doing.” Or, second, I could say simply that “I did not catch any fish that week, and I will keep on trying.” The first assumption seems rather arrogant, while the second one is more realistic and respectful. (There is a third assumption that I could make which would be that I am not a good fisherman, but we won’t go there).The same holds true for students with disabilities. Imagine a child who does not talk with the spoken word and moves around using a wheelchair. Her teachers have worked with her for a month and have not yet seen any evidence of what she understands. In fact, they wonder if she knows or is aware of anything at all. These teachers can make one of two assumptions. They can assume that “what you see is what you get” and that this child does not know anything, that her brain is as empty as that lake. As such, they can educate her in a way that reflects those assumptions (perhaps segregated classes or regular classes with low or no expectations). Now imagine her as she graduates and uses a communication device to say, “Why did you treat me so poorly?”. I am smart and you wasted twelve years of my life!” A very dangerous assumption was made, with results that none of us would desire.

Now, consider the second assumption. These same teachers can recognize that her movement differences are differences and not deficiencies. They can assume that she knows lots and just isn’t currently able to show what she knows. Her brain is as full of knowledge and potential as that lake is of fish, but they just have not been able to reel anything in yet. As such, her schooling would reflect these high expectations and she would be considered and respected as a valued member of her school and classes. Now again, imagine her twelve years later at graduation, using her communication device to say, “Thank you from the bottom of my heart to all of my teachers who believed in me and made me feel as if I truly belonged and treated me like all of my classmates.” This is the least dangerous assumption, one that results in a young woman who can celebrate her full and fulfilling life.

But consider a third scenario as well. What if we never come up with a way for this young woman to communicate her intelligence? What if, after twelve years as a valued and respected student in all general education classes, we still do not know exactly what she has learned and knows? What harm was done? What was lost? Nothing. And that truly is the least dangerous assumption.

Understanding the concept of “least dangerous assumption” and acting on it are two different things. The idea of considering all people as capable and intelligent may not come naturally to some people due to the influence of society’s prejudices against people with disabilities. Most well intentioned adults and professionals have been taught to believe in the out-dated paradigm and, therefore, may make very dangerous assumptions about students with disabilities. Many people’s first impressions of people with disabilities are tainted by years of societal prejudice and media portrayals of what is enviable and worthwhile. While the power of these experiences is strong, we can no longer allow this to serve as a justification for the perpetuation of the prejudices against students or adults with disabilities.

The question we should all be asking ourselves is: “Do you really believe that the individual with disabilities is a valued and competent and unique person?” Think long and hard about that question. If you cannot honestly answer “yes,” then the next question is simply, “Why?” Think about your beliefs, your experiences, and the prejudice you have

been taught. Ask yourself how you can change those dangerous assumptions and mindsets. Talk with people who are friends, parents, siblings, lovers, and colleagues of people with disabilities. Listen to people who have been segregated or devalued because of the way they look or move or communicate. Learn everything you can about the many ways people communicate and get around and show us who they are and what they know. Introduce yourself to people who had labels of mental retardation while in school, who now are able to communicate their thoughts and feelings and tell us all, loud and clear, “I am intelligent!” Recognize your prejudices and work through them. It will not be as difficult as it first seems. And you will never again make assumptions about people that result in the loss of opportunity, experience, or respect.

All people are people first. Everyone belongs to this wonderful life. No one should have to conform to someone else’s standards before they are told that they are “good.” We all belong. We all have strengths and weaknesses and our own individual potential to be great people and to live the lives we want. We can all lead happy and fulfilling lives, supported by those around us to be successful adults. It is up to all of us to examine our own core beliefs and to spread the word of the least dangerous assumption. We can no longer allow the justification of a prejudice that is so dangerous. Now is definitely the time to believe that all people are valued individuals with limitless potential. Keep on fishing – the lake is overflowing!!!!

Rossetti, Z. & Tashie, C.

University of New Hampshire
Institute on Disability

10 Ferry Street, #14

Concord. NH 03301

http://www.iod.unh.edu

International Day of Acceptance

Tomorrow, Jan 20th, is the International Day of Acceptance.  International Day of Acceptance is sponsored by an organization called 3E Love.  The mission of 3E Love is “to create and market products and services that embrace living life no matter the obstacles, and by doing so, educate society and empower those with disabilities to love life.”

We have ordered t-shirts to wear.  I have a magnet for my car.  And Chloe is passing out sillybands to her class.  We are ready to observe the day.  We are ready to celebrate the day.

International Day of Acceptance is a day set aside to celebrate life — namely the lives of people with disabilities.

To accept people with disabilities.  To embrace them.  Not to wish that they were more like us.  Not to feel sorry for them.  Not to ignore their disability.  But to fully accept them and to fully accept their disability.  To embrace them exactly like they are — for it’s their disability that makes them the person they are.

To accept people with disabilities.  To embrace them.  Not to wish they fit into our world a little more easily.  Not even to help them adapt to our world.  But to embrace them so fully that we adapt our world to fit them.

To accept people with disabilities by educating those around you.  Some people need help to know how to accept others and to know how to accept others’ differences.  The more you are accepting and the more you talk about being accepting, the bigger the impact you can have on those around you.  People will learn by watching you accept people with disabilities, but they also need to hear your words and your thoughts about how and why you choose to accept others.

Accepting people with disabilities; thus, empowering people with disabilities.  If our community is totally accepting of my children, then my children are empowered to enjoy their life.  When people in our community adapt their world to fit my child exactly like she is, then she is empowered to excel right now today.  Not waiting on a cure.  Not waiting on a miracle.  Not waiting on another day when people are more comfortable with her, but she is empowered right now today to live her life to its fullest.

That’s what International Day of Acceptance means to me and to my family.

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