Pity vs Care & Concern

A blogger/advocate I’m fond of lives in the Cincy area and has three daughters, the middle happens to have a limb difference and uses a wheelchair to get around. 

I always enjoy her thought-filled posts. She highlights special needs families/individuals which I find very eye-opening. On social media today, she had a small blurb about pity versus care/concern:

“Here’s the deal, pity may seem innocuous... and often times it is mistaken for empathy, but pity is actually quite harmful. Pity stems from judgment. Pity looks at someone else’s life and makes assumptions. ‘Oh, I feel bad for her, she’s in a wheelchair. That’s sad. Her life must be hard.’

Often pity is disguised as care and concern--in fact most people have the best of intentions and mean it in a really, really nice way. ‘Bless your heart. You are so BRAVE.’ People with disabilities don’t (necessarily) have a harder/worse/sadder life. And they are not brave for simply living life and being a part of the world. And when pity is placed on you week after week and year after year, it becomes a weight. Carrying the weight of pity is harder than having a disability, e.g. LIVING YOUR LIFE IN THE BODY YOU WERE GIVEN. 

And it’s not just the metaphorical weight of pity, because the repercussions of pity are real. Like when you’re afraid that pity will keep from being able to get a job. 

Today’s #specialneedsspotlight couple (my first couple interview ever!) Vin and Sara both talk about pity and their concerns as young, disabled adults about the enter the workforce. Vin says, ‘Pity is definitely becoming a big problem and concern for me as I enter the “real world” and begin my career in aviation. I’m really worried that when I’m working that people will not take me seriously and belittle me because of my disability. I’ve come into contact with people who pity me constantly, if I’m out at school or at the store, pretty much anywhere I go.’ I hope you guys take the time to read the spotlight today because it’s basically a two for 1 deal!”

Vin & Sarah

Disability Discrimination

It’s alive and it sucks. I have a friend who was quoted a higher rate for her daughter at a daycare for “special needs“ - this sweet girl did not need any extra care than another typical kid.

Another peer just this week was asked to discontinue swim lessons because the instructor had no special needs training... despite the boy’s father holding him the entire lesson. Thankfully the business acknowledged their mistake and were incredibly sorry.

And now, shame on you, United Airlines.... “had they bothered to ask, they would have learned that Sean is a very capable young man, and Eagle Scout, a graduate of the Mason LIFE program at George Mason University, an athlete, and an employee who lives on his own with roommates.” (link below)

United Airlines Discrimination

If your business isn’t sure how to handle these situations, training DOES exist. DSAGC has an Outreach Coordinator who will come and train your staff on down syndrome and how it can positively affect you:

“When I do presentations I try to tailor it a bit depending on the audience.  So if we’re talking to medical professionals I’m sure to talk about ways to give a sensitive diagnosis, with educators I may mix in classroom modifications for learning, or if it’s business owner and employees who are serving customers or clients with disabilities I will speak even more heavily about stigmas, avoiding assumptions, people-first language, etc. I’m always sure to share anecdotes about the children and adults I know through the DSAGC and what they are capable of.

Presentations typically cover these areas:

-        What the DSAGC does and how we support families

-        What IS Down syndrome

-        Common visible and invisible traits, strength and challenges

-        Common medical issues and how they may or may not influence interactions

-        Life expectancy and what people with Ds CAN do – learn, attend school, work,
          volunteer, vote, date, cook, live independently

-        Language, people-first language, what to say and NOT to say

-        Inclusion in many forms”

Mariclare Hulbert of DSAGC

Lately in Photos

Nothing too out of the ordinary lately. It’s been way to warm for mid-October in Cincinnati. Our A/C was turned BACK on on this weekend - booo. 

October is Down syndrome Awareness month, but I post so much Ds news and updates here, the pieces on social media are just redundant. I just hope people feel comfortable to ask questions - I’ll never stop educating! 

Hannah at her latest eye appointment. She looks so big!

Tim and I had a date night a few weeks ago thanks to my parents!
We ate at a local place then went to Target alone!

Little Peanut practicing her jumping! I love this face!!

Went to our local farm for pumpkins and a hayride!

Scary ooooooo!

Yup.

Our good friend, the Nappy Wolf of Shaw Farms.

Laughed out loud at this while in (slow) traffic.

Nora has been “lonely” in her room and we finally agreed to let her sleep with Hannah. It’s actually been beneficial for us for the two weeks or so it’s been going on. We don’t stay with Hannah until she falls asleep. One of us gets a good extra hour to clean up or exercise. And Hannah has been sleeping through the night.Nora falls asleep first, then Hannah snuggles up beside - or ON - Nora and falls asleep. It’s very cute.

Hannah Progress

Just making some notes to record based on reports back from Hannah’s preschool team - lots of progress! We’ve also noticed her word formation is becoming stronger!

Hannah and I were playing with a new gift from Aunt Molly last night and Hannah was able to match her shapes - woo hoo!

She continues to work on her PT skills; walking across a low beam, using both hands on the stair rail for support, bean bag tossing...

In OT she’s working on sorting/matching. Last week she sorted 7/10 objects and threw the other three (but did pick them up). Geez Hannah!

Her ST said Hannah did so good last week, she thought we worked on vocabulary with Hannah - we didn’t (!). Half the vocab words she verbally approximates (tries to say) and she imitates almost all the signs as well. Hannah seems to do best with her speech in my opinion, which I love.

Ms. Booth (her teacher):
“Hannah impressed us as she is really trying hard to do the motions to our welcome song!”

Today is picture day also - ! I asked the sitter to groom her a bit before she got on the bus - I really hope someone gets the barrette to stay in her hair!