Saturday, August 6, 2022

The Disability Blogger Weekend is back from its break

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Friday, July 22, 2022

The Disability Blogger Weekend Link-up: Cool off with these reads

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Friday, July 15, 2022

The Disability Blogger Weekend Link-up is ON

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Saturday, July 9, 2022

The Disability Blogger Weekend Link-up has begun!

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Saturday, July 2, 2022

The Disability Blogger Weekend Link-up: May the Fourth be with you

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Saturday, June 25, 2022

The Disability Blogger Weekend Link-up awaits you

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Friday, June 17, 2022

The Disability Blogger Weekend Link-up is up!

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Saturday, June 11, 2022

The Disability Blogger Weekend Link-up returns once again

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Sunday, June 5, 2022

The Disability Blogger Weekend Link-up is now actually up

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Friday, May 27, 2022

The Disability Blogger Weekend Link-up: Memorial Day Weekend edition

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Tuesday, May 24, 2022

Steve Tyler feeds a child with disabilities and the Internet explodes


Yesterday, my friend Drew shared a video that had been posted on TikTok and gone viral. Eeka McLeod has three children with disabilities, including 5-year-old Eli. Eeka had connected online with Mia Tyler, a daughter of Steve Tyler (as in, Aerosmith). Mia invited the mom and son to her little boy's birthday party, Steve Tyler befriended Eli and the rest is social media history. 
@themcleodfam

Bc I keep getting this question…here ya go!

♬ original sound - Stephen Stanley

If you are the parent of a child with physical challenges, you may know that self-feeding can be a struggle. You may also be well aware that when you feed an older child in public, it can attract gawking. And you might know that it is not something people are always willing to do, especially during these germ-cautious days. Back when Max was little, his challenges with feeding himself prevented him from going to many camps—camp directors told me staffers could not help.  

Steve Tyler seemingly had no hesitations. He put pieces of pizza right into Eli's mouth, just like a  parent would. I am not ready to declare Steve Tyler a saint but this is not something everyone would do. While the  collective "Awwwwwww" reaction does nothing to help anyone, perhaps the video will make people more aware of feeding needs, and feel less apprehensive. 

There was another person-helps-disabled-person story I read the other week in a large parents group I'm in. A mom was pitching in at her daughter's senior party. Evidently, as this girl and her friends stood around taking photos, they invited a teen with autism to join them. He had come to the party alone. He was overjoyed and later told the mom how grateful he was because, he noted, "I'm not usually included in things." The mother mentioned in her post that she thought what the group of teens did was a good example of inclusivity, which is why she was sharing what happened.

I will sum up the majority of comments: "Tears in my eyes! Beautiful story! Amazing! All the feels! A great reminder! I can't love this enough! Tears!"

Rare was the commenter who saw it the same way I did: Had the group interacted with this boy ever before in high school? That would have been inclusivity. And while it was great they were nice to him in the moment, the fact that he was so overly grateful for those few minutes of being in a group photo showed how low the bar is. 

Exactly. 

We live in a world where gestures like this are seen as the biggest deal because: 1) Children and teens with disabilities are often not included with their peers and 2) Children and teens with disabilities are seen as people worthy of pity and kindness, not parity. 

I worry about the message these stories spread. And OMG, yes, better that this group of high schoolers did include that boy then the opposite. But better that these stories did not bring tears to people's eyes or even be worthy of posts. Better that children and teens with disabilities were just a standard part of school social life. And that is so much easier said than done to be sure. But if you are a parent reading this, you could use these stories as springboards for discussions with your children.

Why was it nice of that group of teens to include that boy with autism?

Why do you think it made that boy feel so happy? 

Would it be good if those teens were friendly to that boy at other times? Why?

Why do you think people are sometimes not so friendly to children and teens with disabilities? 

How do you think that boy would feel if those teens were always friendly to him? 

Exactly. 

Image: Screen grab/video by Eeka McLeod

Saturday, May 21, 2022

The Disability Blogger Weekend Link-up: It's go time

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Friday, May 13, 2022

The Disability Blogger Weekend Link-up: Post now!

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Saturday, May 7, 2022

The Disability Blogger Weekend Link-up: weekend news

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Friday, April 29, 2022

The Disability Blogger Weekend Link-up is waiting for you

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Friday, April 22, 2022

The Disability Blogger Weekend Link-up is here for you

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Monday, April 18, 2022

The pandemic helps an autistic child step out of his comfort zone

This guest post is by Jane Kim. A writer and mom of a nine-year-old with autism, she works in the field of immigration and lives with family in the Philadelphia suburbs. Find Jane on Twitter @JkimRites.

It’s often hard to venture out and try new things when your child is on the autism spectrum. Unexpectedly, the pandemic gave us extra courage to step out of our comfort zone and establish new routines. 

Playdates, celebrations, the shuffling to and from lessons and sporting events were never an ingrained part of our routine. For almost a decade, my family has established our own routines. My son, T, was diagnosed with Autism Spectrum Disorder (ASD) at age three. When he was a little kid, we had a team of therapists that would visit our home. When T started school, most of those therapies transitioned to school, so after school and on weekends, we spent time outdoors hiking, visiting playgrounds, riding scooters and biking. When the weather was colder, we read, played board games and listened to music. There were few playdates. Reflecting on our lives back then, the activities that filled our lives in our free time mirrored those that many pursued during the pandemic.  

Then in March of 2020, the pandemic was upon us. With racial injustice, death and social and economic disparities on our collective conscious, we learned to be kinder to each other. Months into the pandemic, I felt the shift. People said thank you and showed up bare-faced on Zoom meetings. Life slowed down long enough for us to ask each other how we were doing, how our families were doing and to listen and to give real answers. The vulnerability in those answers often gave me new appreciation into the struggles they were facing. Life right now is tough, but we’re in this together. We’ll get through this. The pandemic provided a bit of a respite from the lack of participation in All the Typical Things a 9 Year Old Does. It demanded isolation be the norm, and it took time to recognize that feeling I had been missing for so long: We were now part of the group, sharing the same experiences.

When the world started to open up again and much of our community was vaccinated, I spoke with T about some ideas I had, based on his interests. He was all in. In the fall of 2021, T began group swimming lessons and joined a choir. I could not have imagined the support and camaraderie that would come next — only that I won’t know for certain if it would have occurred without the backdrop of the pandemic. Regardless, I am filled with hope that when the right people enter your lives at the right time, inclusion can happen organically.

T joined a group swimming class. The pool was indoors and heated, with bright citrus colors on the walls. There were many lanes, with each class occupying a lane. It was loud, splashy and fun – all the ingredients needed to feed a kid’s soul during a pandemic. T made progress the first 3 months, and then he stalled. After a couple more weeks, I spoke with one of the instructors about giving him an extra push, as he often needs that to get to the next level. She told me they would keep a closer eye out on how he was doing next class. When T arrived for the next class, he was instructed to go to another lane. She encouraged, cheered and taught T one on one for the entire class. By the end, I was in disbelief – I had never seen him swim at that level. She had taken the time to see his abilities and trusted he could do it. Since then, he’s had more individual lessons, unprompted by me.   

T also joined a group choir. In speaking with Rae Ann Anderson, Director of the Children’s Choir at Settlement Music School, about T and the novelty and uncertainty of fitting in with the group, she said, “Let’s give it a try.” T auditioned and promptly became a junior choir member. Practices were weekly, for an hour in the evenings, and they were fast and furious. T was assigned a seat in the front row, in an effort to minimize distractions and so Mrs. Anderson could provide more guidance if needed. Sitting outside the auditorium in the lobby, craning my neck to see what and how he was doing, was futile - I needed to get more comfortable with not knowing. Over the course of 5 weeks, I witnessed snippets of T learning the ropes: Mrs. Anderson would subtly point at a section in the sheet music or put a hand on T’s shoulder if he was fidgeting too much. 

T’s laughter could be heard as the group warmed up their voices with zees and zoos, and then an older choir member helped T assemble his music in a neat package at the end of the practice. At home, I’d overhear the occasional Hebrew stanza. The practices would culminate in a Spring Concert, where four other choir branches would all participate. In addition to the weekly practices, combined monthly choir practices started in January. They were two hours, with about 70 choir members. I spoke with Mrs. Anderson and gave her the heads up that T may leave after an hour, and we would play it by year. T remained engaged in practice for about an hour and a half. But then he saw Mrs. Anderson conducting and wanted to be a part of that. He stood next to her, and for the rest of the time helped her do her job. Many of the kids gave him a thumbs up and continued singing. And he continued singing as well, just from a different vantage point.

I will look back on the pandemic with an array of emotions. But most notably, I will remember taking that first step to venture out and establish new routines — and being embraced and supported during a time of isolation.

At the end of every choir practice, the song is always the same:

May you go in peace and joy,

May you be surrounded with love.

May your days be long, seasoned with a song,

May you always go with peace and joy. 

Wishing this for you and your families as we enter spring.

A special thank you to Goldfish Swim School in Media, PA, and Rae Ann Anderson, Settlement Music School.

Saturday, April 16, 2022

The Disability Blogger Weekend Link-up: enjoy!

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Friday, April 8, 2022

The Disability Blogger Weekend Link-up is good to go

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Sunday, April 3, 2022

The Disability Weekend Link-up made it up!

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Monday, March 28, 2022

A mind of their own: The intellectual ability of people with intellectual disability

"He understands a lot!" the woman says to me. 

"Oh, yes, he does," I agree. 

Dave and I are talking with a potential babysitter for weekends, and she's just met Max. I'm always taken aback by how surprised people are by Max's intelligence. Intellectual disability is relative; Max has plenty of smarts though to be sure, I didn't totally get that during his early years. Until you know someone with intellectual disability, your perspective can be colored by preconceived notions and outdated stereotypes. 

When Max was a tot, what I most noticed was what he was lacking. He wasn't walking. He wasn't saying sounds or, for the longest time, words. He couldn't grasp or pick up a ball. He couldn't feed himself. Couldn't/wasn't/couldn't/wasn't/couldn't/wasn't, went the soundtrack in my head. Doctors, specialists and society in general are laser-focused on milestones. And when your child isn't just behind but bypassing them, it's pretty much all a parent can think about. 

As time went on, I learned to understand Max's intellectual and physical abilities. To focus on what he could do, rather than what he couldn't. To appreciate his unique mindset and strengths—his incredible emotional intelligence and intuition, his social skills and charm, his excellent navigational skills that rival any GPS. 

"I can see the brightness in his eyes," a doctor told Dave and me when Max got a stem cell transfusion almost 12 years ago. And it's always been true. 

March is Developmental Disability Awareness Month. It's also Cerebral Palsy Awareness Month (though not everyone with CP has ID). And I'm celebrating them in honor of my Max, who at 19 years old is full of intellectual ability. There is a tremendous range of smarts and brightness in this world, and people with intellectual disability aren't on the "low" end—they have their own unique intellect. And who are the rest of us to judge?

So what if standard test scores say differently—they are no reflection of a person's reality, as standard test takers of every ability know. So what if Max is not a person who does Wordle or reads the newspaper. So what if he thinks he is going to someday live in a Los Angeles fire department when he gets older; that boy can dream big. So what if he is not in college; he is acing the school of LIFE

Max isn't just aware, he is ON it, some days more than Dave or I am.

"Russia is bad," he said to me a few weeks ago. He'd been down in the basement, aka the Max cave, watching the news. 

Max knows.

"I have a half day of school on Friday!" Max texts.

Oopsie, forgot about that—but Max knows.

"Why are you mad at Daddy?" Max asks when he reads a ticked-off text I've sent Dave.

Max knows.

"I didn't take my medicine yet!" Max informs me at 9:15 p.m.

Max knows.

"We have to turn the clock back!" he tells me on daylight savings time weekend. 

Max knows.

"Homework!" Max reminds me.

Max knows.

Ben is grouchy and could use a kiss.

Max. Knows.

Max is full of confidence and smarts, and he knows it. He is a person with intellectual disability as defined by the so-called norms. And he is a person with intellectual abilities as defined by anyone in their right mind. 

If only more people could see it.

Friday, March 25, 2022

The Disability Blogger Weekend Link-up starts now

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Friday, March 18, 2022

The Disability Blogger Weekend Link-up: Share and share alike

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Friday, March 11, 2022

The Disability Blogger Weekend Link-up: Here we go, once again


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Friday, March 4, 2022

The Disability Blogger Weekend Link-up is live


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Monday, February 28, 2022

A Texas couple adopts a disabled child from Ukraine just in time


If you're a parent of a child with disabilities, you know full well that you love them as much as you love any of your children. You know they have their own unique abilities, like any children. You know that they can be as awesome as any children. Unfortunately, these are not things the world at large often sees or understands.

And so I am always beyond grateful when I hear about couples adopting children with disabilities, especially when I read a story last week about a couple in San Antonio, Texas, who adopted a four-year-old with cerebral palsy from Ukraine—and escaped just in time. This is their incredible story, with a list at the end of fundraisers for nonprofits that work with Ukrainian orphans.

Kelci and Theron Jagge were parents to two kids in 2020 when they decided to adopt a child with special needs. As Kelci wrote on the fundraiser they started for the adoption:

I came across an Instagram reel of two little boys with Down syndrome hugging and the caption said it was the first time one of them had shown affection. I was captivated by the family's story of adoption, which led me to discovering Reece's Rainbow. I spent two days looking at all the pictures of children on their website / social media and shed many tears for these precious souls. I felt like we had to do something. 

The situation for orphans with disabilities in the Ukraine is especially grim. Photojournalist Christopher Occichone, who is based in Kyiv, has documented what he's seen in an ongoing projec. The photos are deeply disturbing and heartbreaking. It's hard to fathom the additional isolation and hell these children and teens have endured during the pandemic, and what could lie ahead because of the war.
 
"In an orphanage in central Ukraine, a handicapped child spends their life in bed, often restrained."
Christopher Occichone

And yes, this is happening in 2022. Ukraine is said to have one of the largest orphanage systems in Europe, with an estimated 100,000 orphans. The system includes children with disabilities who were abandoned by their families, brought to light in filmmaker Kate Blewett's 2012 documentary Ukraine's Forgotten Children. Under the communist system, parents of children with disabilities were encouraged and expected to hand them over to the state to care for them. Even after Ukraine split from Russia in 1991, the practice continued. 

When Kelci spotted a photo of a bright-eyed, brown-haired orphaned boy on Instagram, she fell in love. Ruslan had cerebral palsy and used a feeding tube. She and Theron began the adoption process in 2021 and in December, they visited an orphanage in Kramatorsk, in Eastern Ukraine. The couple returned on January 31 to finalize the adoption. An amazing nurse, Valerie Bitterman, accompanied them; she has helped transport eight adopted orphans from Ukraine in the last several years, including ones with disabilities. 

The Jagges secured a visa for Ruslan, said to be the last one granted by the U.S. Embassy in Kyiv before it was evacuated. And then it was a race against time to get out before the potential Russian invasion. They planned to leave on February 12th. At the airport, they were detained and told their papers weren't valid, and that Ruslan would have to wait another 30 days.

Ruslan had pneumonia and fever. He was in withdrawal from meds he'd been giving at the orphanage.
"I told them, 'Look at our son,'" recalled Kelci. "He's going to die if you make us wait 30 days. He cannot survive 30 days."

The border guards wouldn't back down. The Jagges and Valerie returned to the apartment they'd been staying in, and their adoption agency hired a lawyer to help. She gave the odds of persuading the border guards a 50/50 chance.

They prevailed, receiving only a verbal agreement. On February 14, an internal source came to visit the Jagges, tipped them off that a Russian airstrike would be happening and told them to flee. They raced to the airport, which was filled with panicked people. Valerie Bitterman detailed on a GoFundMe she started for the family what happened next:

By the grace of God, we went through an immigration line that had a border guard that had not harassed us two days before, and she stamped our paperwork and let us through! The level of relief in that moment was unlike anything we've ever experienced. 

The four of them were able to get on a flight to Istanbul, then returned to the United States. Ruslan immediately went into intensive care, and has been progressing. A Facebook post from Nurse Valerie on Saturday said that he has been downgraded from the ICU to the Medical-Surgical Pediatric Floor.

I've been watching daily YouTube updates from Kim Johnson, an American couple who started Wide Awake International. They run a ministry in the Ukraine for youth with disabilities and have themselves adopted and taken guardianship of six disabled children and young adults. They live in a village outside Zyhtomyr, in the Western part of Ukraine. Kim broke down as she spoke on Saturday. "It's just crazy to be in a place," she said, "where, it's like, nobody's coming to save you."

We can't send defense forces to help. But we can hold the families and the orphans in Ukraine in our hearts, and we can certainly send financial support. They'll need it now, more than ever: During the battles in Eastern Ukraine from 2014 to 2015, UNICEF reported on one orphanage that stopped receiving food and money for additional food and medications from the state. The children survived thanks only to locals. 

If you'd like to make a donation to help orphaned children in the Ukraine, or orphaned children with disabilities, consider these nonprofits:

Life2Orphans receives and distributes donations, medical supplies, food and other support to orphans and the neediest in Ukraine. You can donate here or on their Facebook fundraiser

Donate to Wide Awake International here.  
 
Maya's Hope Ukraine 2022 Emergency Fund
: Launched in 2011, it supports families of children with special needs in Ukraine and the Philippines.

Legacy Refuge is a ministry dedicated to helping orphans in Ukraine; their fundraiser is here.

Photo: Kelci and Theron Jagge

Friday, February 25, 2022

The Disability Blogger Weekend Link-up: It's cold outside, cozy up to good posts!


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Be like Max

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Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Friday, February 18, 2022

The Disability Blogger Weekend Link-up is good to go


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Be like Max

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Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Saturday, February 12, 2022

The Disability Blogger Weekend Link-up: Is it spring yet?


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Be like Max

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Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Friday, February 4, 2022

The Disability Blogger Weekend Link-up goes on


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Be like Max

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Friday, January 28, 2022

The Disability Blogger Weekend Link-up: snowed-in edition


What to do if you're new  

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Monday, January 24, 2022

Be like Max

Winter break already feels like it was eons away, mainly because my children were doing virtual school on and off these past few weeks. I didn't have any time to put my one New Year's resolution into action, which was: Be like Max. Literally, be

We went to Florida for winter break. I was somewhat mostly extremely freaked about being in the airport and demanded that everyone double mask and wear face shields, which pretty much made everyone hate me. 

 
We made it to Florida by way of Chicago, because our direct flight was one of hundreds cancelled that day. Whatever—I was just thrilled to be there or, really, anywhere but home. Max was thrilled to be somewhere warm. I mean, it wasn't Los Angeles but for once he did not remind us every five minutes that he needed to move there (although he did repeatedly say, "New Jersey is not healthy for me!!!" as an excuse for trying to stay longer).

Max was thrilled to see palm trees. He loved visiting the local fire station and going out for ice-cream every night. But his absolute favorite activity was standing on the landing near our room and looking out at the traffic and people walking around below. He did it during the day. He did it at night. He got to be such a permanent fixture there that the housekeeping crew greeted him by name.

Years ago, I surely would have felt anxious about the fact that Max preferred to stand around and do nothing, rather than having fun in the pool (he went in once), going to the beach (not his thing) or even to the Tampa zoo (he threw a fit and refused to go in). But now, I not only accepted that this is what he preferred to do, I admired it. 

Max has the ability to get lost in thought. Granted, he also has the ability to get lost in his iPad for hours on end. But being able to observe, ponder, take everything in and just be is something that's hard for me to do and, I'd say, a lot of adults. If I'm not multi-tasking, I'm doing it in my head. Yoga's not my thing. I could try one of those meditation apps, but somehow I never get around to it. 

My restless mind, as yogis would call it, is in part fueled by having a shit-ton to do and because always doing helps me avoid thinking about unpleasant stuff I don't want to think about (like, Covid). Also, it makes me feel useful. I caught this Insta post from Glennon Doyle over vacation and thought YES. This. 


On vacation, I did get to catch up with myself for a little bit. But coming back from vacation is the worst time to put your resolution to be more pensive into practice. 

And so here I am, headed into a new week. I'm aiming low—I've scheduled 15 minutes on my calendar. for tomorrow, Tuesday. It's a meeting with myself I've titled "DON'T DO ANYTHING." Maybe I'll take a walk or actually try a meditation. Maybe I'll just stand on our porch or deck and stare. 

My mantra: Be. Like. Max. 

Saturday, January 22, 2022

The Disability Blogger Weekend Link-up is good to go


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: What we've lost, what we still have

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Saturday, January 15, 2022

The Disability Blogger Weekend Link-up: Darkness cannot drive out darkness, only light can do that


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: What we've lost, what we still have

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Friday, January 7, 2022

The Disability Blogger Weekend Link-up enters 2022


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: What we've lost, what we still have

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Click "Enter." Leave a comment if you want to say more. Go check out some great posts.



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