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Archive for January, 2014

Aaron’s a Dude: Dignity of Risk

Aaron’s a Dude: The Dignity of Risk

Saving the LUCK

For several years Aaron spent 3 days on a Dude Ranch in Michigan.

Before the Dude Ranch closes for the winter, buses of adults with all kinds of disability labels arrive and sleep in bunk houses, eat in mess halls, go boating, ride horses and sing songs around the campfire. For many of these adults—this is the highlight of the year.

The ranch’s owner is friends with the owner of the residential company which provides Aaron’s supports. (This is a great example of Bronfenbrenner’s system’s theory—circle of friends, using your contacts…click here).

Aaron is assigned a staff counselor one-on-one, but everyone pitches in to make sure everyone is safe and has a good time. Always being safe and having a good time sometimes contradict each other. Bob Perske used to talk about, “The Dignity of Risk” and as parents this is a complex and difficult balancing act.

This year we were lucky because one of Aaron’s regular staff went to camp. This was nice because she has worked with Aaron for 6 months and knows what Aaron likes and doesn’t like. So that helped mom’s anxiety and I would think made a big difference to Aaron.

This is about Aaron’s fifth dude experience and each time it’s a worry for me and Aaron’s dad. It is hard to get good feedback on what Aaron does and doesn’t do. I wish he could talk and tell us but I figure it is a change of pace, he likes to ride on the bus, sing songs. Especially, he likes to go horseback riding.

Aaron as a little cowboy

When Aaron was growing up, he took horseback lessons for about 10 years. He only stopped because he reached the 150 pound weight limit. When Aaron sits atop a horse, he looks like Prince Charles: head high, back straight, sometimes he even points his toes. I think he and the horses communicate in their own cosmic language. Sue Radabaugh, Bobbi Theis and the physical therapist at Cincinnati Riding for the Handicapped gave Aaron and each rider a lucky horseshoe at the end of each series of lessons.

We learned horseshoes should always be positioned so the luck stays inside the horseshoe and doesn’t fall out. Aaron still has the horseshoes–God knows we don’t want to have our luck fall out.

Each year, I try and give Aaron “the dignity of risk” and not worry about the million of things that can go wrong at camp. I don’t like to think of myself as one of those “over-protective” or “hovering” parents. Some years have gone better than others, but each year we hope and pray our luck holds.

It is just difficult having a person like Aaron who is so vulnerable, when we don’t really know how the staff will act in this very different environment. For instance, Aaron has red hair, freckles, and burns in about 15 minutes in the sun. His caregiver is from Jamaica and has never had a sunburn in her life. I send sunscreen, I give instructions, but each year we ask, “Will Aaron come home with a sunburn?” In the post about deciding to go to the family reunion (click here) I could actually do the ecological assessment and control the environment. But the Dude Ranch is too far away. I had to put the control in the staff’s hands. And we’ve had some rocky experiences with some staff.

We did find out that Aaron went right up to the horses and wanted to ride, he went out on the lake in a boat four times, and he passed out the light bracelets for the barn dance the last night. The little radio we sent for the bus ride worked well, and actually came back with Aaron. Only one toileting accident. So all is well for another year. Hopefully we will see some pictures. And hopefully we will be even better prepared for next year.

Maybe I should hammer some horseshoes (with the luck inside) up on our front door. Whew! made it another year.

Aaron’s Olympic Moment

Aaron watching Tommy play Nintendo

Aaron watching Tommy play video games

Is summer different for kids with and without disabilities?

As parents of children with disabilities, it is difficult to know “What is realistic?” “What goals do I want?”. I have always found it helpful to measure “normalization” by comparing the life of my son Tommy with his brother Aaron. Below are my thoughts about summer activities when the boys were young teens. The lessons I learned helped me cherish the final “inclusive” story below. Hope you’ll share your thoughts and success stories.

Tommy, my 13 year old son, with the label of “normal”:

Went to 2 weeks of Boy Scout camp, an experience which included a hike on the Appalachian Trail.

Had to choose between participating in baseball or soccer which included 2 practices a week and a game. In August he began daily training for the school cross-country team.

Was active in a neighborhood network of five boys who decided to start a Gaming Exchange Club. His friends called him the minute he arrived home from activities, played games until supper.

Was invited to stay overnight with a friend or cousin 3 times and his friends 5 times.

Had a season’s pass to a nearby amusement park and spent at least one day there each week with friends.

The days of summer flew by for Tommy. He had individual activities with friends, but also family activities which included a camping vacation and travel to a National Park. His major frustrations were either the lack of time for pursuing all of his interests, or his Mom’s suggesting he do something “dumb” like reading a book or practicing his clarinet.

Our family on a camping trip

Our Family Camping Trip

Aaron, age 14, with the label of autism, intellectual and developmental disability:

Aaron went to two weeks of “special” camp: Easter Seals and Stepping Stones.

Aaron’s major activity was watching Tommy play baseball, video games…and riding in the carpool to drop off Tommy and his friends.

Aaron also has a pass to the amusement park, but can only go with an adult (his mother).

Aaron spends every morning saying, “bus, bus … ready, set, go.” When the school bus doesn’t come, he sometimes licks on the front window, bites his hands and puts on his coat and backpack. He can’t figure out why his routine is different from the other 9 months of the year.

Aaron also can’t figure out why we spend all winter telling him to keep the front door shut, and all summer telling him to keep the front door open (but that’s another story). *smile*

He was not invited to overnights with cousins or friends.

What’s the Difference?

As I contrast the lives of my two boys, I can’t help thinking…

• …perhaps I wouldn’t feel Aaron’s isolation and lack of contact with any friends or same-age peers if Tommy had fewer friends.

• …perhaps I wouldn’t worry about Aaron’s behaviors, physical condition, weight and stamina if he were occasionally an active participant, rather than always an observer.

• …perhaps our family will adjust eventually to the sadness (and stress) we feel knowing Aaron’s only opportunities come from mom, dad or brother…and realizing it may always be that way.

* …perhaps we wouldn’t feel so trapped if we could get respite regularly.

* …perhaps we’ll become accustomed to wearing a key around our necks so that the door can be locked with a deadbolt every time someone goes out or comes in (otherwise Aaron will run into the street or enter neighbors’ homes).

* …perhaps we’ll resign ourselves to our community’s “special” camps and “special” recreation programs, which effectively exclude Aaron from almost everything that is typical, regular, easily available and low cost.

* …perhaps hope will sustain us that someday a “community support” agency professional from somewhere, anywhere, could adapt, modify and begin to open community activities for Aaron and others.

* …perhaps/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people.

Summary: “Separate is Inherently Unequal.”

The tragedy of having a child with a disability has nothing to do with a syndrome, impairment or disease. Words such as autism, CP, and intellectual disabilities are just descriptors the same way hair color, height, race, sex and personality are descriptors. Children don’t start out life knowing they are different. The tragedy is the reaction of families, neighbors and society, which emphasize differences.

The conflict for people with disabilities and for their families comes when the community limits opportunities, segregates and restricts individuals’ choices (e.g. Handicap swim is Tuesday; 1:30-2:30 p.m. and General swim is Monday to Friday 8:00–5:00). If Aaron had an inclusive swim buddy, Aaron wouldn’t have to go to “handicap swim” but rather the general swim with the other kids.

It doesn’t matter that the limiting of opportunities appears, to have a good rationale or charitable intentions. Segregation limits freedom, limits choices, and limits development.

“Special” means segregated.

Our Olympic Moment of Inclusion

One hot July day, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for an impromptu picnic.

Unexpectedly, one of the boys asked if Aaron wanted to come along.

Five minutes later, all the kids were laughing, talking and riding their bikes to the park. One red-haired kid named Aaron was riding on his bike in tandem with his brother.

In about one hour the picnic ended and they brought Aaron back.

That was the highlight of Aaron’s whole summer.

Our Olympic Moment–not, Special Olympic Moment

That moment for Aaron was sort of like the experience of an Olympic ice skater, gymnast, American Idol singer who practices day after day hoping to “bring it all together” for one magic performance or “big break.”

It was a “victory” –a spontaneous, normalized recreation experience, without his mom! Ahhh (smile-sigh).

And now…back to work. But, perhaps, just perhaps…those wonderful, typical neighborhood kids will grow up more fully with the vision for and the experience of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church and scout learners.

The change of inclusion has begun.

Keep Climbing: Onward and Upward

All my best,

Mary

Related Stories:

On the last day of Junior High School.

Dream Plan for Aaron–14 yrs old (Part 2).

America the Beautiful: A Family Vacation, Plus.

Share YOUR Thoughts:

Are summers different for kids with and without disabilities where you live? Can you think of anything you could do to help? Any way to include a child in the activities of your children? Any tips to share? Any stories from the 90s? 2012?

It’s a Jungle out there| Inclusion in the Grocery Store

Eyes of the tiger
Creative Commons License photo credit: Swamibu

2006

Aaron, my son with the labels of autism and developmental disabilities, had a doctor’s appointment so I brought him late to his adult day program.

A Visit to the Jungle—Jungle Jim’s that is.

Thanks to cell phones, I connected with his group on their community outing at Jungle Jim’s. This is a mega grocery store with a jungle theme: animated monkeys, giraffes, and other animals spread throughout the store. It’s a pretty neat place and features foods from around the world.

Like most people, Aaron and I got a grocery cart when we entered the store.

Adults with Disabilities in Large Group

We found the group–immediately.

Coming down the meat aisle, two women in their 30s were holding hands walking in front of three people in wheelchairs. Both woman had Down syndrome were about 5’6” and weighed about 200 pounds. Another man (about 50) was holding hands with a female staff person. The second staff person was pushing one of the people in wheelchairs. They did not have any shopping cart.

Gosh, I wonder how we found them so easily?

When one of the staff people saw Aaron pushing a grocery cart, she said she was surprised he had those skills and could tolerate the noise and confusion of a grocery. I assured her Aaron was fine and in fact, since he was in second grade, grocery shopping was part of his functional curriculum (click here).

Plus, when he lived at home, he went with me to the store 4-5 times a week. I expected Aaron to do well in the grocery and even expected him to participate in the shopping and make choices for the items he liked. Aaron actually met some of his former classmates at our community store (click here).

The staff person didn’t really pay attention to what I was saying. Since she was the professional in charge, and I am clearly just the mother, she politely said I could leave and she would watch Aaron (along with the other six people).

To her surprise, I smiled at her and said there was NO WAY I was going to leave. (What I actually said was a lot nicer–what I was thinking was actually not a lot nicer.)

Preschoolers

A group of preschoolers were also visiting Jungle Jim’s that day. The teacher had prearranged an instructional tour. A store employee, dressed like a jungle safari guide, was explaining how cheese comes in huge round blocks from many different countries. Even with the guide in her camouflage pants and a netted hard hat, and the teacher saying “Who can tell me what shape that is?” all the kids were gawking at our group.

Our two aides, of course, just kept herding the group of adults with disabilities down the aisle. They talked to each other about the general prejudice of our society toward people who are different, and young children who just didn’t know any better. After all, they are Christian women who care about the “least of God’s children” and they are the enlightened ones earning their crown in Heaven.

Purpose of the Grocery Trip

Unlike the preschoolers who were making the trip to the grocery an educational experience, I asked one of the aides what our group was buying at the grocery. She shrugged her shoulders and said, “Oh, it is the end of the month, we are out of funds–so we are just looking around, enjoying the air conditioning.”

Shock in Aisle 4

I was with Aaron and our group for about 15 minutes and I was on the edge of hysteria. I literally had to do calming breaths. I felt like I was in a time warp from the ‘80s. I kept thinking of the years Aaron’s occupational therapist, speech/language pathologist, physical therapist, teachers and instructional assistants taught Aaron to plan his purchases, buy items, make choices, use his picture communication book, use his wallet, push the cart without hitting anyone, maneuver around kiosks and displays set up in the middle of an aisle…. Aaron even worked at a grocery store, with his job coach, stocking shelves as part of his work transition plan.

Normalization

I also thought about everything I knew about normalization–to go to the store in small groups (no more than two) and blend into the population. To have the skills and behaviors of a consumer so you were a valued customer and respected member of the community.

I remembered Alison Ford’s presentation about, “There is so much more at the grocery store” and the Syracuse Functional Curriculum. And Marc Gold, Lou Brown and Sharon Freagon’s slides using the grocery store for a teaching environment because it was a community environment that would be used for a lifetime–multiple trials over multiple years.

Inclusion and the Jungle

One of the lessons of nature is that for animals to survive, they need to blend in, or be camouflaged into the environment. That is why polar bears are white, and alligators look like logs floating in the river. It is why the female cardinal, who carries the young, is a dull brown and her male partner is bright red to attract the attention of predators.

The history of man also tells us about the power of in and out groups. We segregate criminals in orange jumpsuits so they stand out and everyone knows there is danger. The Nazi’s forced the Jews to wear Stars of David arm bands to clearly stigmatize and identify their enemies. Police uniforms identify people who we can ask for help.

The history of people with disabilities also includes the stigma and isolation of people as being so different, so dangerous that parents would point to strangers and urge their children away.

I talk about some of these stigmas in my story about America the Beautiful (click here).

Because Aaron does not communicate like other people. Because Aaron has some bizarre behaviors. Because it takes people a while to get to know him. Because of his labels… we make sure Aaron is well groomed, wears stylish clothes and can survive by blending into existing groups.

We practice the principles of normalization and inclusion everywhere we go. We work hard to help Aaron be seen as a contributing member of the community, a valued member of a family, a friend, a loving uncle.

Like the jungle, “the survival of the fittest” belongs to those who can camouflage themselves into the natural world, or in disability-speak, be included in the community.

Tiger Mom

Obviously, none of these aides had read about this, or anything else. In fact, these loving caring aides who work for minimum wage do the job as a labor of love. They are not trying to stigmatize Aaron and his group–they just don’t know any better. They are not trying to alienate and waste the people’s time and let their skills deteriorate—they really, really, really just haven’t been trained.

So, of course, Tiger Mom took over.

That day I decided to stay and try to teach some skills. I have trained parents and teachers, I have a lifetime with Aaron so Tiger Mom went into action.

I figured the normalization lesson would have to wait because there was no way our group was ever going to blend in. (How could two aides handle seven people with significant disabilities, three who used wheelchairs?) We also did not have enough staff to divide up in small groups and spread out in the store.

Let’s Buy Something?

So I suggested, “Let’s buy something, and I will treat. What could we make for a snack? Or what do you need?” (MAKING CHOICES—giving dignity to the people.)

One person suggested we make smoothies. Great, smoothies! (That is AGE-APPROPRIATE. People of all ages like smoothies. It was hot outside so it was appropriate for the time of year.) Smoothies it is!

Task Analysis

I ask the group what ingredients we needed to make the smoothies. Each of the seven people had a particular item to find on the shelf and put in the cart Aaron was pushing (FUNCTIONAL SKILL: IF THEY DIDN’T GET THE ITEM, SOMEONE ELSE WOULD HAVE HAD TO GET IT.)

Aaron pushing the cart was a balancing and behavioral technique to keep Aaron on task and keep him from running off down the aisle. It also put Aaron in a valued position because he was needed for each item. It also required each of the people to (SOCIALLY INTERACT) with Aaron.

Teaching “Learned Helplessness”

The people with disabilities all got into it. But the kind, but totally clueless aide was doing everything for them–even putting the item in the cart for them. And, obnoxious me, I would return the item to the person, put it in their hands and ask them to put the item in the cart. (LEARNED HELPLESSNESS.) Geesh!

Since Aaron was pushing the cart, he was like the leader of the safari. He did great, but I swear, the others had either lost their skills or hadn’t had much opportunity to learn about PARTIAL PARTICIPATION and practice being an active participant in the shopping environment.

We had a hard time finding the frozen juices, but guess what? Near the ceiling, there was a big sign that said “JUICE” – which I of course, pointed out so the group could READING CONTEXT CLUES it.

The aides–actually, I don’t know what the aides were thinking—they looked at me like I was nuts to point out a sign to these people who they knew couldn’t read.

CONCLUSION

The safari ends with checkout and the group being loaded into the vans.

I let Aaron leave with the group. I said goodbye and I hoped they enjoyed their smoothies, and then… I sat in my car and cried for 20 minutes and was depressed for the next week.

All of our fight for inclusion in a regular school, fight for a functional community-based curriculum, all the research and knowledge we have acquired for the last 30 years in special education–and here is Aaron in the middle of what felt like a freak show.

Even if I tried to feel some redemption about the functional shopping experience with the outcome of them making a smoothie, and even if I tried to ignore my overstepping boundaries and staying, “Just a mother.” The low expectations (click here) and lack of skills felt hopeless. All the skills that Aaron had, and now was losing.

I haven’t resolved this. The aides were good people doing a tough job. Imagine lugging 7 adults in and out of vans, and not having the funds to buy anything on a trip to the grocery?…. but my heart just breaks for Aaron. His dream plan, years and years of work–and it is like it never happened.

Children have value and hope. The adult world has no mandates, no IEPs or due process. Where are the people who certify these programs? How can these good aides have so little support and resources?

Thanks for listening, I know you don’t have the answers either. I stopped in Aaron’s day program again yesterday and the group was making lady bugs on green construction paper leaves from a pre-school activity book. Geesh!

Deep breathe, in-out-in-out.

Lady bugs are supposed to be good luck, right?

I feel like I should end with a joke or something to lighten this up, but I feel betrayed by the paid “Professionals” in our county who know better. Where are they?

Am I really supposed to just “feel grateful” that Ohio has any programs at all, and Aaron’s developmental twin in Tennessee and South Carolina are just sitting at home doing nothing?

Of course, last year was worse and at least now, Aaron is out of the crowded back room with no windows at the sheltered workshop.

He is surrounded by kind people who care about him. It could be worse. But wow, it certainly could be better.

Keep Climbing: Onward and Upward

All my best,

Mary

Please chime in:

What would you have done? Would you just watch? Would you just leave Aaron and go? Would you go back to the grocery for a bottle of scotch? Any suggestions? In this jungle, what would a “normal” shopping trip look like for the people with severe disabilities? What message do you think the preschoolers got? What would be better?

If you liked this article, please share it on Facebook, Twitter and other social media. Thanks.

ADA and Advocacy| one step at a time

How about you?

Is ADA a Part of your Life?

My parents, teachers and culture taught me to blend in, not cause trouble and certainly never ever draw attention to myself. That all changed when my son Aaron was born with autism and developmental disabilities. Aaron couldn’t speak for himself, mom had to do it. HAD TO–not something I chose or wanted to do.

Advocacy (speaking for others) is learned–the same way we learn to run a race, or learn to read. Advocacy takes much practice and the trial-and-error of many mistakes and some successes.

So as the parent of a person with disabilities I learned to ask questions, read, research, go to workshops and meetings, meet with like-minded parents and professionals AND with people who were 180 degrees opposed to ideas like normalization, inclusion and civil rights for people with disabilities. I learned about making change with Bronfenbrenner’s embedded systems: individual, local, state, national and world.

I learned to work with other parents, adults with disabilities and advocates. Our big successes were keeping IDEA alive when Pres. Reagan was trying to repeal it and helping pass the civil rights legislation: The Americans with Disabilities Act (ADA).

This month ADA celebrates its 23rd birthday. We have accomplished much. But there is still much to do:

The Arc and other advocacy organizations are trying to get the US to adopt the United Nations Resolution (this is just embarrassing for the US).

Almost on the anniversary of ADA, the justice department in Florida sues over children being forced to live in nursing homes.

A young woman with Down syndrome just won a lawsuit over her guardianship.

And in Africa, there is a course for people with disabilities on how to be effective beggars. Yep, couldn’t make this up.

The Power of One

There is only one way to keep moving forward with civil rights—each of us has to make sure the law is enforced and vulnerable people have the same opportunities as others. One person. One situation at a time.

I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do. Helen Keller

Last year I talked about my ADA experience at our community center. And this year, I can show you the results:

I did this: a Step with Railing

I did this| a Step with Railing


An Example of Advocacy

I joined the local community center and went to the pool. There was a lift for a person in a wheelchair and an entrance where the water gradually increased in depth 1 inch at a time.

But almost all of the seniors went down one step and walked along a side wall to get in. I almost slipped and fell trying to get down that step. I noticed several other people had the same problem creating a potentially dangerous situation.

I’m thinking a simple railing would solve the problem and help everyone who gets in the pool: children, adults and seniors. Universal design, right?

Okay, now I had belonged to this community center for approximately 45 minutes. I had the cheapest membership. I was still using a damn walker from a recent surgery. What should I do? Did I really want to raise a fuss? 45 minutes—I hardly had the right to say anything.

Stating the Problem:

Script of Conversation

I started with the immediate supervisor, the head Lifeguard and “I” statements:

Me (smiling): “I almost fell getting into the pool.”

Lifeguard: “There is a gradual entrance into the pool, it starts at 1 inch and gradually gets deeper.”

Me: “Yes, but there is nothing to hold on to. And I can’t walk without support. I’m having trouble putting any weight on my left leg.”

Lifeguard: “We have a wheelchair lift. We have steps with railings on the other side of the pool.”

Me: “Yes, but the concrete is slippery and it is far away from the locker room and main entrance. Everyone seems to be using this step and holding on the wall to get in, I saw several people almost fall.”

Lifeguard: “Yes, I hold my breath every day. It’s not a good situation.”

Me: “So, how can we fix it? It seems to me a simple railing would solve the problem. So, who could make the railing happen?”

Lifeguard: “Well, they won’t listen to me, so how about the director of the center.”

Finding the Authority who can Make Change

Me: “Hi, I almost fell when I got into the pool. I watched other seniors also have trouble. I talked with the Life Guard and a simple railing would be a good solution.”

Director: “This is the first time this has come to my attention. But we really don’t have the funds to fix this.”

Using the ADA Wildcard

Me: (I’m standing there with my walker) “I’ve noticed most of the seniors in the pool use canes or walkers. The concrete is very slippery even after the Life Guards sweep the excess water back into the pool. I’ve also seen the wheelchair lift and the showers with extra bars, seats and hand showers. So, I know you are trying to meet the requirements of ADA.”

Director: “Oh yes, we are very aware of ADA.”

Me: “Are you the compliance officer for ADA? I have been going to physical therapy in the rooms that adjoin the pool. They have an excellent staff and I’m sure they could give you good advice on the types of railings that would work the best.”

Director: “We really don’t have the funds to do this, and no one else has complained.”

Me: “Have you talked with your Life Guards about this?”

Director: (squirming) “We meet the minimum requirements of ADA. We have the lift, which was very expensive and doesn’t get much use. Thank you for coming, but I have another meeting to go to.”

Me: “A railing is a safety issue; it is a reasonable accommodation for the seniors (and everyone). Could I have the complaint form for ADA?”

Director: (giving me the once over) “Of course.”

Put it in Writing

I filled out the complaint form including not only the railing, but the lack of mats, hand showers some of which didn’t work well, and the fact that the seniors had to somehow maneuver the heavy doors into the locker rooms with their walkers and canes (while they were wet). I also made sure the date was at the top and asked for a copy of the form.

I handed it to the director, let her read it, then looked her in the eye and said, “Do we really need to file an ADA complaint? This is such a wonderful community center; surely there must be a way to make this happen. Do you have a suggestion form or some other form where I could give this information and it would be addressed?”

Director: (giving a sigh) “Yes, we do have another form for suggestions. I am beginning to understand some of your concerns. I’ll have my staff look at this and get back to you.”

Me: “Terrific, I’m sure you’ll see the problem. I’ll stop back when I’m going to therapy.”

The Slam Dunk

By the next week, the director had met with the Life Guards, checked out the locker room showers, watched some of the seniors and others who used wheelchairs, walkers and canes try and open the heavy doors to the locker room. She also consulted with the physical therapists who work in the pool.

She called and asked what kind of railing I wanted. I said whatever the professional team decided—they saw many people go into the pool, and I deferred to their judgment. She said in August, they drain the pool to do the necessary repairs. They could add the railing then.

I thanked her, again complimented her on the wonderful community center–and meant it.

ADA Works, IF You Use It

After I did a happy dance, I thought of Justin Dart, Ed Roberts, Bob Williams and all the other advocates who worked so hard to make ADA happen. I thought of ADAPT members getting hauled to jail. I thought of the public hearings, the many petitions, letters and phone calls we made. I thought of visits to the legislative offices of congress–Senators Harkin, Kennedy and Representative Coelho telling their personal stories. I thought of our local efforts to make ADA happen in our state.

ADA is our legacy. It is our gift to future generations. ADA has the power to make people listen. ADA impacts the present and the future—not just of people with disabilities, but all of us.

When I learned advocacy skills for Aaron, I never realized that one day I would “Cross the Yet” and be the one who needed modifications to my environment.

But, if I hadn’t spoken up, the step would still have no railing and the locker rooms would not have electric door openers. Now, maybe no one would have gotten hurt. But, just maybe, I helped save someone from a serious accident—maybe even me.

As a battle-worn advocate, in the big picture this was an easy victory. Granted it was very small. Only a handful of people even knew what happened.

But every time I enter the pool, I watch children, adults, seniors go up and down the step—and I smile. I did this!

RESOURCES:

If you would like to learn more about the history of ADA and the civil rights movement for people with disabilities check out this information from DREDF.

If you are interested in learning more about becoming an advocate visit Partners in Policymaking.

Audio: “Solidarity Forever” – Justin Dart, with introduction and songs by Jeff Moyer

Video: “Storyville: The Personal Stories of Advocates of ADA”

Comments:

Has anyone else had a success story (or not) with ADA? With Advocacy? Anyone else have tapes running in your head about being a “good” boy or girl and just accept things as they are? Can you name a specific accomplishment?

I’d love to hear from you in the comments. If you liked this story I ask that you use your social media to spread the story. Thanks, as always, for being part of our Climbing Every Mountain community.

Keep Climbing: Onward and Upward

All my best,
Mary

Related Posts:

What is Charity?

The Power of One

Remarkable Parents and Advocates who never Give UP.