Why Some Parents Are Dismayed Over Lego's New Wheelchair-Using Figure

The toy company Lego recently released a Duplo Community People Set, a collection intended to educate young children about a variety of different people and occupations.

This latest collection includes something parents all over the world have been requesting on behalf of their children for months: a Lego figure with a disability. However, the new toy isn’t exactly what they had in mind. Rather than including a child with a disability, Lego’s new toy set features an elderly man in a wheelchair.

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Photo from Toy Like Me press release

Organizers for the social media campaign Toy Like Me, a parent-run campaign calling on the toy industry to produce toys with disabilities, say the wheelchair figure furthers the stereotype that disability only occurs in older people and does little to support children who live with disabilities.

“We applaud Lego for producing a wheelchair-using Duplo figure,” Rebecca Atkinson, co-founder of the Toy Like Me campaign, said in a press release. “But it’s so disappointing that the only wheelchair-using figure across all Lego products is an elderly person being pushed along by a younger figure. What does this say to children about disability? That it only exists in the over 65?”

The campaign’s Change.org petition to prompt Lego and Hasbro to join the toy box revolution has garnered more than 17,800 signatures so far, but according to Toy Like Me, Lego has not yet responded.

To learn more about the Toy Like Me movement, visit the campaign’s Facebook and Twitter pages or search the hashtag #ToyLikeMe.

Related: How This Mr. Potato Head Doll Could Lead to Better Disability Representation in Toys

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When You Feel Like a Wallflower in the Special Needs Community

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I will never forget sitting with our neurologist in one of a dozen identical rooms with that geometric wallpaper following a chair rail around the perimeter. All three campuses have that same paper and somehow incorporate it into remodels and new construction. The design looks like something from my childhood. Do they have a stockpile? Do they special order it? He asked about my daughter Adelaide’s new words since our last appointment. As we started listing off the new words and how they sound, his face stayed compassionate. But I could see what he was thinking behind his eyes.

Twenty-something slurred attempts at words that may or may not even have meaning to her. In six months. “Mama, she does well for being nonverbal.” Nonverbal? Suckerpunch. But she counts and sometimes mimics and says, “Eat!” But I already knew she was nonverbal. I just wasn’t using the word. I had intentionally not even whispered the label.

It was like getting the wheelchair. An admission of something I was secretly hoping would change overnight. When we were wheelchair shopping, I actually said to my husband Dave, “We don’t need to get something that grows with her. She’s only going to use this for a short time. She’s not going to need it long-term.” And Dave gave me the same look. The “oh honey” look. He put his arms around me and I just stayed there, finally admitting what I knew was true. “She may never walk. And if she doesn’t, I should get a chair that can grow with her.” And I found a chair, since we had to pay out-of-pocket anyway, that could grow with her until she hits double digits.

And then even strangers asked, “Does it grow with her?” and my answer of, “Yes, it does. We were blessed to find one,” rolls off my tongue, while my brain shouts, Can’t anyone else believe with me that she won’t always need it?!

We started learning sign language before Adelaide was called “nonverbal.” As I bought DVDs, books and flashcards, I kept saying, “She’ll talk someday. We are learning sign language for a season. A short season.”

Then I posted in a Facebook thread about Adelaide being nonverbal and someone responded that she wasn’t truly nonverbal because she says some words. I deleted my comment and instantly felt like I was without a camp. My daughter doesn’t talk. She occasionally says things she hears. She sometimes lets me know what she needs. But she talks less than her baby sister does. She isn’t verbal, but she isn’t nonverbal to a community of women who will never hear “Mama.” And I have heard it.

A message from a woman I had never met confirmed our outlier status. “Don’t say Adelaide is nonverbal. My son has never said one word. He has never said my name. He is truly nonverbal. I read your ‘blog’ and saw that Adelaide talks. You don’t belong here.” Her choice of punctuation around the word blog was the cherry on top.

We don’t belong anywhere. Adelaide uses a wheelchair, but she can crawl. She is nonverbal, but she says “Hi!” She uses a bottle, but she holds it herself. She can count by 10s to 100, but she won’t stop trying to eat stuff out of her diaper.

For now, we are part of the sign language community. Even though Adelaide has minimal hearing loss. We invest daily in learning signs. Practicing our alphabet. Finger-spelling. Because we don’t know if Adelaide will always be nonverbal, but she is now. And has been for three years.

We have a substantial library of sign language resources and have invested in new materials every tax return. We also used our tax return money to buy our long-term wheelchair. And that’s our season. Buying things we may need for one year or a lifetime.

And we are special needs wallflowers. Up against that outdated wallpaper. But still making it work. And “blogging” about every awkward step.

Follow this journey on Little House in the City.

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How the Siblings of My Child With Special Needs Define Grace

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The dictionary definition of grace is simple. As a verb, grace means to do honor or credit to (someone or something) by one’s presence. In my life, this grace has taken many forms, but none is as beautiful or pure as my boys’ love and care for their baby sister.

My boys were 11 and 12 when their little sister was born and, truth be told, they were not that excited. It had been me and them for so long and then they had to adjust to a new father figure and had barely begun to accept that when a new little human was added into the mix.

Fionnula Grace entered the world blue and unresponsive. Soon after her birth, we noticed the seizures starting. As she grew, so did her diagnoses. At 6 years old, she has a laundry list of syndromes and specialists and binders and rows of daily medications and rescue medications and a house full of therapy equipment. Her older brothers accept all these things with grace and love.

Never once have they wished for a different sister, a different life. From the first moment she was placed in their arms they became her protectors, their gift. Grace has followed. At 17 and 18, Finn’s brothers know how to recognize and time her seizures, administer her medication, hook up and use her feeding tube, utilize her rescue medication, handle meltdowns, give expert hugs and kisses and snuggle her to sleep when she needs it most. They’re her ninja buddies, hide-and-go seekers, joke tellers, secret keepers and best friends. Grace.

On a recent family vacation, we traveled (by tiny car) across the country. For three days, my teenage sons amused their sister as we drove hours every day. They stormed across Civil War battlefields, gazed up at the dizzying height of the arch, road amusement rides that were much too small so she could hold their hands, swam in the ocean, found shell after shell and danced on the street to jazz music. Grace.

They are also the ones who stroke her hair during a seizure while their eyes fill with tears. They have been bitten and hit and kicked during her meltdowns. They help her breathe through her asthma attacks, and they’ve rubbed aching joints when her ED flairs. Grace.

The dictionary defines grace as doing honor to someone by your presence. As a parent of a child with special needs, I define grace as their siblings. Those unsung children who rarely have both parents at any school event (and are usually lucky to have one there), who miss events because of doctor visits or ER stays or rescheduled therapy appointments — they are grace.

The brothers who curl up in hospital beds next to their baby sister and remind their mom and dad to eat breakfast; not to worry, they can watch their sister. Grace. The 17-year-old who stopped during the grand march at his senior prom to pick up his crying sister, take a picture with her and give her a balloon and flower from his date’s arrangement. He walked the rest of his grand march with her. Grace. The 16-year-old reading “Pete the Cat” with the same funny voices 100 times because repeating the same story calms his sister down. Grace.

Grace can take many forms, but none has been more clear, pure and consistent than my boys and their love and acceptance of their sister.

Follow this journey on Birds in the Nest.

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The Moment This Woman Without Arms Embraced a Little Girl Just Like Her

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Jessica Cox proves you don’t need arms to accomplish incredible things.

She has a Black Belt in Taekwondo, has earned her Bachelor’s degree in psychology and is the first woman to fly a plane with her feet, according to Guinness World Records. Now, Cox, who was born without arms, in addition to her work as a motivational speaker and humanitarian, is currently promoting “Right Footed,” a documentary film about her life.

During the premiere of the film at EEA AirVenture, an airshow in Oshkosh, Wisconsin, Cox met RE, a very special little girl who also doesn’t have arms. The two shared a moving embrace.

You don't need arms to return a hug... or give one. Jessica Cox with RE who was also born without arms

Posted by Right Footed A documentary film about Jessica Cox on Sunday, July 26, 2015

 

You don’t need arms to return a hug… or give one,” read the caption on the sweet photo, posted to Cox’s documentary film Facebook page on July 26.

RE was also born without arms, and her mother drove six hours to get her daughter there to see Cox, according to another post on the page.

Cox and RE got to spend some personal time together chatting and hanging out. RE even got an autographed poster for Cox’s film.

See Cox and RE together in the video below:

We're at AirVenture and just met RE, who was also born without arms. Her mother drove six hours to get her here ... and...

Posted by Right Footed A documentary film about Jessica Cox on Friday, July 24, 2015

 

I can tell you today that if I was given the choice, I wouldn’t want the arms,” Cox says in the documentary’s trailer below, “Because of the wonderful things I’ve been able to do, [and] the lives I’ve been able to touch.”

See the trailer to Cox’s documentary film below: 

Go here to learn more about Jessica Cox and her upcoming film, and visit this blog to hear more about Cox’s experience meeting RE. 

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24 Things I Learned in the First 24 Hours of Being a Preemie Mom

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I became a preemie mom on April 27, 2012. I will never forget that day. I became a different person, and as a first-time mother, it was a crash course in parenthood I wasn’t prepared for. On Monday, I was a mom-to-be, just beginning to “show,” and by Friday he was out and I was empty. My pregnancy ended 16 weeks early, and I had no idea how we were going to survive the NICU and all of its uncertainty. I couldn’t imagine my 1-pound son making it out of there and becoming a full-term baby. It hurt; it hurt like heck.

I will never, ever forget that day.

However, through that pain, I learned so much. Tragedy and love will do that for you — teach you lessons in one day it takes other people a lifetime to learn. My journey with my son, 5 months in the NICU and beyond, has given me a deeper understanding of life. Much of it I learned in the first day of his being here.

Here are the 24 lessons I learned in those first 24 hours.

1. I am strong. I just gave birth to a baby boy, and I’m not even thinking about the pain. I would get up and walk right now, stitches and all, if it meant I could see my baby. But I can’t. I have to wait. And I’m strong enough to do that, too.

2. A mother’s love has no conditions. My baby looks like a creature from space — incredibly small and frail — and I think he’s the most beautiful thing I’ve ever seen. One pound of pure awesomeness.

3. My mother was right. I don’t know what she was right about for sure, but something tells me as I travel this road, I’ll find many things she had spot on. Yeah, she knew what she was talking about.

4. I will miss all I missed. No first cry. No long bonding moment. No tears of joy. I will not have those moments with this child. And it makes me sad. But there will be others, and I will appreciate them so much more. So. Much. More.

5. Pregnancy is important. The next time, I’ll rest. I’ll relax and take it easy. I’ll cherish it. I’ll let everyone cater to me. I’ll make sure not to miss a single minute.

6. One-pound babies can grow and live, and there’s a place they do it in. It’s called the NICU. I never knew it existed until now. Soon the NICU will be my home. It already has my heart.

7. I was listening in church. I know how to pray. I’m so glad I believe I have God’s number. I’ve prayed more since becoming a mom than all of the years before, combined. I’m praying as if my child’s life depends on it. I can’t do much, but this I can do.

8. I really, really want to be a mother. And I want to be a mother to this child. I was silly for wanting a girl or worrying about labor pains. All that matters is that my child survives. I want to love this child so badly.

9. I am not alone. Everyone is here, surrounding me. I am loved. My child is loved. I have the greatest family and friends a girl could ask for. My life is filled with reasons to be grateful. I need to thank them more.

10. My husband, my man, is amazing. He’s scared to death but still protecting me. He’s worried about both of his babies. He’s really showing me I made a good choice. I’m blessed to have him. I need to thank him more.

11. Yes, your heart can really break. It can break in two and make you feel like disappearing. The love for your child can do that to you. No one wants to lose their baby. The fear of it alone hurts more than can be explained. My heart is actually, really, broken. Millions of pieces scattered in the hall that leads from my room all the way to his incubator.

12. People have it all wrong when they talk about their pregnancies. I believe a healthy baby and healthy pregnancy is all they should ask for. A healthy, happy baby and mommy. That they leave the hospital well and together as planned.

13. I would sacrifice everything for this child. If God gave me a choice, I would do anything to keep my baby here. I would give the world. I would give my life.

14. Doctors don’t know everything. They said he may not survive. But I can see it in his eyes. My baby has what it takes. He’s planning to be here and they will have to chalk it up to miracles.

15. You can survive the worst day of your life. I just did.

16. It’s OK to be honest. I’m scared. I feel guilty. And I really need all of you right now. If you leave me alone, I will get lost in my sadness. So, please stay.

17. Babies are stronger than we think. Look at him, fighting to be here and he doesn’t even know what “here” is. He’s only 1 pound, but he’s taking it all in stride. I should do the same. I need to put my big-girl undies on.

18. I can be mean. Mess with my baby and feel my wrath.

19. Parenthood is no joke. Most parents have just the fluffy stuff for the first few years of their child’s life. But preemie parents jump right into “my child might die” mode. We gave birth to a baby who needs life support. Decisions have to be made. Their life is in your hands. Being a parent is major. It can get real, real fast.

20. My kid is special. His dramatic entrance will make him the most prayed for and talked about baby around. He will survive and his story will follow him all the days of his life. People will introduce him forever with the words, “Do you know he was born just 1 pound?” Folks will be amazed. And that’s pretty cool. I believe God will get the glory. He will change lives.

21. I believe prematurity happens too frequently around the world. Something needs to be done. No one should have to go through this.

22. I should have enjoyed the peace-of-mind more. Peace of mind is a blessing. I believe it’s a gift from God. It means all is well. The next time I have it, I will thank the heavens for it.

23. There’s so much more to life than this. Life is beautiful and deep. The journey deserves our attention. It deserves our reflection. Stay in the moments and appreciate all of the good. You will need it to hold on to when things get rough or when pregnancies don’t go as planned. My life is filled with moments missed. I can’t let that happen anymore.

24. The little things are all that matter. Now that I’m a preemie mom, I understand this. Encourage. Practice kindness. Be grateful. Health, happiness and strength are so important. Be thankful for all of the things that make every day worth living. They aren’t on TV and they don’t cost any money. They can be found in the people we love, the things that make life beautiful. And oftentimes, they can be found in small incubators, in crowded NICUs, fighting for the chance to grow, love and thrive.

Follow this journey on Praying 4 My Preemie.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Man Says Starbucks Banned Him for Confronting People Parked in Handicap Spot

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A man from St. Petersburg, Florida, claims Starbucks issued him a letter banning him for life from all of its stores.

Rob Rowen says the letter maintains that he disrupted business and threatened customers, according to WTSP. He told WTSP this is all because he’s confronted people who allegedly parked illegally in a handicap spot outside a Starbucks in Tampa.

Starbucks spokeswoman Laurel Harper responded, telling WTSP the following:

We understand Mr. Rowen’s concerns and have been speaking with him about this. Unfortunately, he became confrontational toward other customers, and we have asked him to refrain from visiting the store. We expect all of our customers to treat each other and our partners (employees) respectfully. We have been speaking with the landlord to improve the parking situation.

For more on this story, head here.

The Mighty reached out to Starbucks for comment but has not yet heard back.

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