14 Quotes That Inspire Me as a Disability Advocate

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This year will be my eighth year as a disability advocate. During that time I’ve received accreditation as a national speaker, worked on several autism-related films and written two best-selling books. I was diagnosed with autism when I was 4. Looking back, I could tell you I never saw advocating as something I’d be doing today as an adult.

On this road, I’ve seen so many beautiful quotes from members of our community. On my tougher days, these words have inspired me; they’ve reminded me that what we’re doing as advocates is making a difference.

Last night I took out a piece of paper and wrote out a few of my favorites that I wanted to share.

  1. “Today you are You, that is truer than true. There is no one alive who is Youer than You!” — Dr. Seuss
  2. “Autism can’t define me. I define autism.” — Kerry Magro (me!)
  3. “If you’re always trying to be normal, you will never know how amazing you can be.” — Maya Angelou
  4. “Normal is just a dryer setting.” — Patsy Clairmont
  5. “The only disability in life is a bad attitude.” — Scott Hamilton
  6. “I’m great at several things and broken in none.” — Kerry Magro
  7. “My ability is stronger than my disability.” — Luke Watson
  8. “When you have a disability, knowing that you are not defined by it is the sweetest feeling.” — Anne Wafula Strike
  9. “Autism is not a disease, rather a disability that every day I strive to become an A-bility.” — Kerry Magro
  10. “I am different, not less.” — Temple Grandin
  11. “If someone calls you ‘awkward,’ just know that it means you’re unique”and a lot better than ordinary.” — Kerry Magro
  12. “Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.” — Martina Navratilova
  13. “If you’ve met one person with autism, you’ve met one person with autism.” — Stephen Shore
  14. “Attacking people with disabilities is the lowest display of power I can think of.” — Morgan Freeman

Autism can't define me...I define

 What quotes would you add to this list? Please share your favorites in the comments!

This post originally appeared on KerryMagro.com.

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To the Stranger Who Held My Fussy Baby and Said Something I’ll Never Forget

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My story goes back to when my youngest son was just 18 months old. He was born with congenital hydrocephalus, spastic cerebral palsy and epilepsy.

My husband and I were attempting to have an afternoon out with the children, but my youngest son was having a particularly difficult time that day at the restaurant. He was extending, crying and being fussy. I was attempting to hold and sooth him while still interacting with my other children. We just wanted a “normal” day.

A woman approached me and asked if she could hold my son. At first I was reluctant, but after several offers, we finally allowed her to hold my son while we finished our food. We relaxed and enjoyed the meal.

When we were finished, she brought my son back to me and thanked me. She explained that once upon a time she had a son. She gave me a big, heartfelt hug and said, “Things will get better. They do get easier.”

I will never forget those words of encouragement. I will never forget that sweet stranger. About a year later we ran into her in an elevator. She smiled and said, “See, I told you it would be better.” I wish I’d thought to ask her name.

Those word come back to me whenever we reach a bump in the road. Things might be difficult but they never last.

I hope she knows what a difference she made in my life by her simple act of love.

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15 of the Most Ridiculous Things Insurance Companies Have Said and Done

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Most of the time, enduring intense public humiliation or even bodily harm would be preferable to dealing with insurance companies. (OK, that’s a slight exaggeration). But insurance companies can be a pain to deal with.

And if you’ve experienced the clogged, bureaucratic nightmare that is getting medical expenses covered, you might have faced some real-life ridiculous situations like these:

1. “They said, ‘We’ll cover the CT scan but not the films or the doctor who read the films.’ …What?” — Meg Grooms

2. “My son has Down syndrome. I was asked by a customer service representative if his condition was permanent…” — Mary Trask


3.
“One of the worst and funniest [calls] was when they told me my son was on a Navy ship, and that’s where they sent his medication. Even after proving to them he was 6 years old, they argued with me for almost 40 minutes. I finally gave up and went back to the doctor for a new prescription.” — Diana Cosman

4. “I’m in the ongoing appeals process to get speech therapy services covered for my son. My favorite reply is: ‘Please demonstrate medical necessity.’ My favorite answer answer is: ‘He doesn’t talk.’” — Brandi Horton

5. “I was told that my 5-year-old is ‘too young’ to have anxiety.” — Laura Jonas McGaffick

6. “Insurance rep: ‘You have to pay for the sedation for your daughter’s dental surgery out of pocket because there are lower cost alternatives.’ Me: ‘Oh, like what?’ Insurance rep: ‘Restraints.’ We paid the $1,000.” — Coleen Carey

 

7. “The ‘best’ thing I’ve been told by an insurance company is that I, the sole legal and custodial parent of my 5-year-old, am not authorized to access his health information because he has not designated me as his representative.” — O Sophia Johansson

8. “An insurance company tried to deny coverage for my son’s open heart surgery he had at 10 weeks old. They tried to claim it as a pre-existing condition because he’d only been added to the policy 10 weeks ago, on November 12, 2008 — that was his date of birth…” — Julie A Kehm


9.
“They asked if my daughters disease ‘was going to be an ongoing thing.'” — Kenneth Mueller

10. “The insurance company couldn’t grasp the concept of twins. They would process the first claim they’d get, then deny the second as already paid. We would call and say, yet again, two claims for two babies born on the same day. ‘Oh, twins! I’ll note it on your file.’ Nope, they never noted that…” — Adrienne Braddock Conroy

11.‘What is autism?’ *head hits desk*” — Anna Perng


12.
“‘Is there any possible way your manager can contact their manager?’ ‘No, ma’am, you will need to fax it.’ ‘Are you saying they can’t email or call?’ ‘No, but you can send a fax to us requesting that we send a fax to them to ask them to call us. Or they can answer by fax.’ — Lyndse Marie Ballew

13. “After several rounds of phone calls to have a feeding chair with supports approved I asked for a letter in writing. The letter stated the chair wasn’t necessary and there was no reason why my son couldn’t eat on the floor or somewhere else. The chair was requested because my son could not sit up on his own and often choked. I eventually won that battle, but I’m still mad about the response.” — Crystal Brockway Harrison

14. “Being told my heart condition — atrial flutter — was ‘Ariel’ flutter. Yes, you moron, I have to go for heart surgery and you’re thinking of the little mermaid. Good for a laugh now, I guess, but wasn’t so funny when I didn’t get paid for four months!” — Wanda Elaine Wylie

15. “I was speechless when my husband’s insurance company covered my son’s wheelchair, minus the wheels. We were billed for the wheels as they were considered ‘an accessory.'” — Andrea Steeves-Belanger


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Watch the Lovely Moment This Young Girl Living With Hair Loss Gets a New Wig

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The smile on this little girl’s face will make your day.

BuzzFeed produced this video that follows the process of creating a wig out of donated hair for children living with hair loss.

In this case, a woman named Hannah donated hair that becomes a beautiful new wig for a little girl named Bridget, thanks to the charity organization Wigs for Kids. Bridget has alopecia, an autoimmune disorder resulting in hair loss.

It might not seem like a lot in the big scheme of things,” Bridget’s mom says in the video below, “but to a little girl, it means a whole lot.”

Watch the video below to see Bridget get her new wig:

h/t Faithit

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What You Need to Know When You Love a Child With Dyslexia

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As a special education teacher, I get attached to many students, especially those who have dyslexia. These children hold a special place in my heart because they’re not like typical children. They can’t just pick up a book and start reading with great fluency and accuracy, but they can pick up some Legos and make something extremely creative and tell you all about it. They can’t write you a full paragraph with correct spellings, punctuation and perfect handwriting, but they can tell you a story straight from their amazing imagination.  Their brain works much different than ours. Let me explain dyslexia….

Dys= difficulty            

Lexia = with words        

Dyslexia = difficulty with words.

Individuals with dyslexia have trouble processing expressive or receptive, oral or written language despite adequate intelligence. They may experience difficulty with the alphabet, reading, comprehension, writing and/or spelling. Dyslexia is an auditory issue, not a visual issue. Having dyslexia doesn’t mean you read, write or think backwards (which is a common misconception). People with dyslexia may have letter reversals (b, d, p, q) or translocate letters in words (“teh” instead of “the”). When accessing oral or written language, parts of their brain don’t activate, causing a missing link. This is where the problem lies.

There are numerous ways to help our children who have dyslexia. Phonemic awareness and Phonics are critical. Using multi-sensory strategies like utilizing a mirror when the child says sounds so they can see how their mouth is moving, moving chips or blocks to show the different sounds in words, using hand motions for letter sounds and blending sounds together. Teaching students with dyslexia to read isn’t much different than teaching other kids, you just have to be more much explicit in your directions, teach them the concept longer and constantly review what they’ve previously learned. Be patient with them.

chip

Children with dyslexia are amazing, although they rarely see it because of their deficits. Most of the time these children have excellent thinking and reasoning skills. It takes a lot of work to compensate for the missing link when reading and writing; they can problem solve their way around anything. Their creativity and adaptations to things will astound you. Many have oral skills that will make you wonder if they’re indeed dyslexic at all. They learn through meaning rather than memorization. Don’t count them out for one second!

Here are some tips on helping and loving your child, who happens to have dyslexia:

  • Let your child know that they aren’t dumb. Explain what dyslexia is and how it affects them.  Teach your child to be self aware and an advocate for his or herself.
  • Don’t overwork your little one. When they come home from school, they need some downtime.  When it’s time for homework make sure you’re right there with them. Read directions or word problems. Give them support and lots and lots and lots of encouragement.
  • If you’re able to connect your child with a mentor or friend that is also dyslexic, DO IT!  These children can feel isolated, and they can easily get depressed because of their struggles. Allowing them to know they’re not alone is good for their heart.
  • Guide them to discover their strengths. Some students excel at making things with their hands, knowing random history facts, playing a musical instrument, being athletic, etc. Praise them on their strengths often.
  • Encouragement goes a long way. You will be their biggest cheerleader in life. Dylexia is lifelong.
  • Give them extra time. Allowing your child extra time for reading, writing, spelling and comprehending is essential. Their brains need this time to process what others’ brains process in seconds. A “504 Plan” or “IEP” should be in your vocabulary. School-aged children with characteristics of Dyslexia need this for extra time or other accommodations to level the playing field.
  • Things not to tell your child when working with them: “Hurry,” “That’s an easy word,” “Sound it out,” “Are you trying?” “You’re taking forever,” “You know you can write better than that.” These are just a few phrases that parents and teachers often say, hoping the child will work better or faster or harder. People with dyslexia are working the best, fastest and hardest they can.
  • Did I say encourage them? Yes! Praise the heck out of them for their work. Show them how proud you are and let them know that you knew they could do it all along. Teach them to aim high. Talk about college and what they can become. Dyslexia is not dooming them in this game called life. They will, unfortunately, have to work harder to learn certain things, but it could mold an exceptional human being who knows how to persevere through it all.

Discover-theirstrengths (1)

If you’d like more resources as a parent to a child with dyslexia please visit http://dyslexia.yale.edu/parents.html.

This post originally appeared on red stick moms blog.

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A Letter to the Governor Trying to Cut Early Intervention Funds

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Governor Rauner,

You don’t know me. Our paths have never crossed — until recently — when I read about your proposed budget cuts to Early Intervention. My heart sunk. I couldn’t catch my breath. Tears streamed down my face.

Since we’ve never met, you can’t possibly be aware that I’m the mother of an amazing 2-year-old, Ceci. You don’t know that she has a smile that can light up the room. And an unbelievably contagious belly laugh. You don’t know that she loves puppies and ice cream and dance parties. That she gives the best and the biggest hugs. Or that she is the strongest and most determined person I’ve ever met.

2015-03-01 10.20.21

You also don’t know that she has hypotonia and a gross motor delay. That she receives physical therapy services through Early Intervention. That without these services, without our amazing physical therapist, we would be lost. She would be lost. And that fact terrifies me.

Early Intervention gives our family hope, support and guidance. Early Intervention gives my daughter a chance.

A chance to walk and explore the world around her.

A chance to be included — to run with her friends on the playground as their laughter dances around them.

A chance to do silly dances with her older sister and giggle until happy tears run down both of their faces.

A chance to reach her potential and, in doing so, experience all the beauty life has to offer.

And although we don’t know each other, I do know some things:

I know if you make cuts to this program, my daughter will no longer receive the services that have been so instrumental in helping her learn to crawl, walk, run and jump.

I know without these valuable services, my daughter will slowly and surely fall further behind her peers.  And she has worked so hard to get where she is — harder than you could ever begin to imagine. How dare you threaten to take that away?

I know my daughter will not be the only child affected — hurt — by these cuts. There are many other Cecis out there — children who need Early Intervention services and who deserve a chance.

I also know there are other moms like me out there — moms who love their children with every fiber of their being and want the best for them.

And let me tell you a funny thing about moms:  when you make one of us mad, you’ve ignited the fury of the masses. And nothing is scarier than a bunch of angry moms.

Governor Rauner, in closing, I realize I may have misspoke earlier. Ceci may be determined, but am the most determined person I know.

If you make these proposed budget cuts to Early Intervention, I can guarantee that you will be hearing a lot more from “yours truly.”

Ali Cummins

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