Saturday, September 22, 2018

You Have A Say

Allison Jonergin
Guest Blogger

Being chronically ill is like being confined to a hamster wheel. Your only options are thrusting forward with maximum momentum or sliding backward with a conscious lack of urgency. Some days you want to slump back into bed, opting out of the fight the day will require of you. Throw in anxiety and depression, and your will is not your own anymore. You have a say, but yours isn’t the only one.

Guest Blogging
Sometimes, rest is exactly what your body needs, but your mind needs you to act decisively, to choose life. As anyone with a chronic illness can tell you, living isn’t a passive process. You’re either fighting your illness or fighting yourself. Choose carefully.

There’s no handbook explaining how to deal with the reality of being chronically ill, day in and day out. The sooner you realize this life is going to be a never-ending campaign, the better.

In the beginning, you’re drowning in symptoms and appointments. You’re logging food intolerances and sleep patterns and trying to keep from falling apart. But soon, there is a calm, a peaceful place draped in sorrow.

Welcome to hell: breakfast is a pile of pills washed down with dissolvable probiotics stirred in water. Kidding. Well, kind of. You see, this is the part where things get better, because you’re fighting for yourself. Why? Because you’ve been to hell, and you’ve clawed your way back. Hell is where the darkness wins. Your anxiety convinces you there is no light at the end of the tunnel, that it’s not worth fighting toward making tomorrow a better day. But it is, because you’re fighting for your life. In the quiet of hopelessness, let your battle cry rise up in your heart, louder than your anxiety and depression.

In the haze clouding the likelihood that you’ll climb out of bed and face the day, lies your greatest power: decision. Loose the grips you have on fear and decide to live for your future, because unfortunately, you’re probably going to have one.

In the realm of chronic illness, one must grapple with the taunting overshadowing promise of viability. Your chronic illnesses won’t kill you, but they’ll sure make you wish they would. Despair is a sneaky devil, taking root in your deepest fears, latching onto your insecurities, your vulnerability, your shame. It gives voice to the quiet doubts you hold in secret, acting like an incubator of thoughts that disarm you of the weapons you need to fight each day you are tasked with completing.

Don’t show up to a gunfight with a knife. Bring your bazooka. Prioritize sleep. Exercise consistently (yes, especially when it hurts). Take your medicine. Eat. Visit your doctors regularly. Resist the urge to self-destruct.
You can feel sad, but don’t gorge on comfort foods that will leave you reeling in pain. You can rest, but don’t forfeit your exercise routine because you’re going through a bad flare. It hurts, but the only way it will hurt less tomorrow is if you overcome today. Each day you forfeit, the climb back to normalcy steepens. That’s worth remembering, because there are days when normalcy doesn’t seem worth the battle. You’re wrong. Normalcy is where happiness lives. Gratitude and joy fill your heart, even as your stomach rumbles. Confidence animates you, even when your limbs are stiff and sore. Smiling comes more naturally than grimacing.

Decide: Are you going to live for making today less unbearable or for making tomorrow more bearable?

You may know the diagnoses, but fight the temptation to believe the crystal ball has revealed every truth.

You have a say.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.

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This is part of a monthly series of guest blogs. Each month NCCI will choose up to 2 submitted blog posts from North Country writers on disability-related topics. This is a paid opportunity. Click here for more information.

Friday, September 21, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media.

You can always visit NCCI on Facebook and Twitter at the following links:


New content is added every day.

This week - September 15-21, 2018:

Lindsay Miller, ALCU Blog - September 4, 2018

The “Money Follows The Person” program needs to be renewed by Congress. This article explores why it’s so important, and what needs to be done to keep the program going.

Stephanie Torreno, Rooted In Rights - September 17, 2018

A home care user explains why aides need to be paid better.

s.e. smith, Vox.com - September 20, 2018


This piece ties together several popular misconceptions about waste and laziness that impact how disabled people are treated in American culture.

Saturday, September 15, 2018

Bowling Fundraiser Raffle Prizes

Winz N' Pinz with North Country Center for Independence

Raffle Prize Baskets!


Take a look at the beautiful raffle prizes we will be giving out at NCCI's First Annual "Winz N' Pinz" bowling fundraiser. The event will be Saturday, September 29, 2018, from 11:30 AM to 3:00 PM at North Bowl Lanes in Plattsburgh, New York.

Click here for the full details and registration information.

Here are photos of the prize baskets, each with a description of what's included:


#1 "Me Time": Basket, Tea Cup and Saucer, Blue Bird Light, 4 Herbal Teas, Candle, Body Lotion, Shower Gel, 'The Secret of Happy Days' Book, Pen, Mini Notebook, Chocolate, Hand Fan, Loofa, Deodorant, Body Powder, and Perfume.


#2 "Home and Garden": Basket, Battery Powered Zen Rock Fountain, 2 Candle Holders, Set of Appetizer Plates, Set of Coasters, 3 Boxes of Seeds- Wildflower Blend, Impatiens, and Shade Mix.


#3 "King Arthur": Cookie Sheet, Parchment Paper, Cook Book, 2 Bags Unbleached Flour, 6 'Essential Goodness' Mixes- Lemon Bar, Sour Cream Coffee Cake, Vanilla Bean Cheesecake Bar, Cinnamon Sugar Puff Muffin, and 2 Chocolate Chip Cookie, Dough Cutter and Vietnamese Cinnamon.


#4 "Back to Basics Game Night": Guess Who, Ker Plunk, Connect 4, and Yahtzee. Basket and Card Games- Memory, Crazy Eights, Old Maid, Go Fish, Slap Jack, Matching, Skip-Bo Jr., and Two Little Hands Card Holders.


#5 "Cozy Crafts": 5 Handmade Journals, Handmade Dream Catcher, 2 Handmade Bracelets, 1 Handmade Necklace, 1 Handmade Throw Quilt, and Tote Bag.


#6 "Good Vibes": Wicker Box, 3 Reiki Energy Candles, 2 Packs Incense Sticks and Holder, 1 Box Incense Cones and Holder, 2 Dripping Candles, Himalayan Salt Candle Holder, Wire Wrap Necklace from KPaige Wraps, and Terrarium.


#7 "Fall Holidays": Basket, Pioneer Woman 3 Mixing Bowl Set, Pioneer Woman Pie Dish, Pie Cutter, 2 Carving Knives, Pineapple Corer, Straws, Dish Towels, Oven Mitt, Table Cloth, Measuring Spoons, Peach-Pecan Whiskey, Holiday Foods, and Gift Cards.

[Photo coming!]

#8 "Camping Excursion": Basket, 100pk Glow Sticks, Roasting Sticks, Graham Crackers, Bag of Marshmallows, Jar of Marshmallow Fluff, Bag of M&Ms, Fire Lighting Squares, 'So Much S'more to Do' Book, 'Camp Daze' Mad Libs, Adirondack Mountain Club Gift Certificate with Lodging and Camping Brochures.


#9 "Co-op Basket": Local Organic and Unique Products from The North Country Co-op.


#10 "Halloween Happiness": Pumpkin Basket, Halloween/Autumn D├ęcor, and Pumpkin Patch/Corn Maze Gift Certificate.

Friday, September 14, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:


New content is added every day.

This week - September 8-14, 2018:

John M. O’Connor, Forbes - September 13, 2018

There’s nothing very new here, but the reasons given are notably realistic and practical.

Edward C. Baig, USA Today - September 10, 2018

“Assistive” technology is quickly becoming just plain “technology.”

Marissa Evans, The Texas Tribune - August 22, 2018


This article about the last huge hurricane in the mainland U.S. feels extra relevant this week, as Florence hits the Southeast.

Friday, September 7, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media.

You can always visit NCCI on Facebook and Twitter at the following links:


New content is added every day.

This week - September 1-8, 2018:

Christian McMahon, Rooted In Rights - September 5, 2018

This is always an important topic, not discussed or explored nearly enough, even in the disability community.

Jessica Grono, Cerebral Palsy News Today - September 4, 2018

Addressing another basic quality of life issue.

Kristen Lopez, TV Guide - August 31, 2018


TV Guide looks at a great show, and makes a strong point about casting disabled actors to play disabled characters.

Friday, August 31, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media.

You can always visit NCCI on Facebook and Twitter at the following links:


New content is added every day.

This week - August 25-31, 2018:

NCCI Blog - August 30, 2018

Here is the place on the web with all the information about NCCI’s upcoming bowling fundraiser. You can use it however you need to tell people about the event, and direct them on how to participate. The post includes a link where people can view and download the registration form. Please share widely! One suggestion … add the link to your email signatures from now until the event.

NCCI Blog - August 29, 2018

The City definitely needs to hear from as many people as possible about the potential problems for people with disabilities of banning plastic straws. Reaching out to our CDPAP consumers could be very worthwhile. Also, other disability agencies, like ARC, may want to weigh in, as quite a few of the people they serve may rely on plastic straws. If we help pass a compromise measure, we will have done better than major cities and companies are doing on this issue, with their blanket bans and vague, lukewarm promises to “consider” the needs of people with disabilities.

Erica Moyes, Running with Crutches - August 23, 2018

This is a good blog post for back to school time, particularly where college students with disabilities are concerned.

Thursday, August 30, 2018

Bowling Fundraiser

Winz N' Pinz with North Country Center for Independence

NCCI’s First Annual Bowling Fundraiser
“Winz n’ Pinz”
When: September 29, 2018 
At: North Bowl Lanes in Plattsburgh, NY
Registration Starts at 11:00 am and the fun starts at
11:30 am and lasts until 3:00 pm

Right-click here to download registration form

Ticket prices:


$20 for ages 18+
$15 for players under 18 years old
$80 for teams


Do you know what the exciting thing is about this fundraiser? Well…It does not matter if you are young or old. It does not matter if you have a disability, because bowling is fun and everyone can do it! So, grab your kids, in fact grab your whole family and maybe the person you just met outside and join us for raffles, prizes and a fun filled afternoon!

So here is what we’ve got planned for you:


Winz N’ Pinz with North Country Center for Independence - September 29, 2018 11:30am – 3:00pm - North Bowl Lanes - Raffles, giveaways & more! - For more information call 518-563-9058. Visit NCCI at 80 Sharron Avenue, Plattsburgh, NY 12901
First up, we have lane sponsorships: If you have a business and would like to sponsor a lane, the cost is $125 or you can sponsor your own employee or family/friend team for $80. If your sponsored team is the one that wins first place, we will present your business with a framed first place certificate for you to display in your business!

Next up, we have the bowling break down: For individuals and teams, the cost is $20/per person (18 +) and $15/kid (17 & under). This includes two games, the shoe rental, and a ticket for the giveaways. In addition, be one of the first 10 teams or one of the first 40 individuals to register and pay, and you will receive a bonus: a keychain with a bottle opener, bowling ball or a bowling pin pen, a 24-ounce bowling pin water bottle and an extra ticket for the 20-minute giveaway raffle. By bowling with us, you also have a chance at winning any of the prizes listed below: 
If you create a team, the top three teams with the highest two game series will receive:

1st Place:  Each member will receive a $25 gift card to a local restaurant, two movie tickets and 
a Gold medal. Once we have the gift cards, we will upload them to our website and Facebook page.

2nd Place:  Each member will receive a $10 Dunkin Donuts gift card and a Silver medal.

3rd Place:  Each member will receive a $5 Dunkin Donuts gift card and a Bronze medal.

If you want to do your own thing and bowl individually, that’s cool too, because we have prizes for you as well! The top two bowlers, in each category, with the highest two game series will receive:

Ages 10 and under — Bundle of age appropriate games

Ages 11 to 17—  $25 iTunes gift card and a Gold Medal

Ages 18 and up— An Amazon 7”, Kindle Fire and a Gold medal

Lastly, we have the giveaways, gift baskets, and raffles: In order to participate with the gift baskets and 50/50 raffle, you must purchase tickets, and they will be drawn randomly throughout the event. Tickets are on sale right now! Ticket packet prices are as follows: 

1 for $1, 6 for $5, 12 for $10 or 26 for $20.

Click here to see our Raffle Gift Baskets!


Tickets for these raffles can be purchased through any staff member either in our office, and of course, during the event. Tickets will be drawn at 3:00pm and you do not need to be present to win. If either of these methods doesn’t work, give us a call – we can accommodate!

Disclaimer: For any of the baskets that have alcohol in them, only 21+ may place tickets for the basket, and only 21+ take the basket. We will ID for any basket with alcohol.

For our 20-minute giveaway, every bowler that registers and pays will receive a ticket to our special giveaway raffle. Tickets will be available at the event for purchase for bowlers. Ticket pricing will follow the same pricing as listed above. We will draw a ticket every 20 minutes and you will have a chance to win a variety of prizes, such as; a hovering soccer ball, a sweatshirt, local maple syrup, local chocolates, gift cards for local businesses and many other wonderful prizes!

For the 50/50 giveaway, it’s pretty self-explanatory, but if you have questions, shoot us an email or give us a call!

The entire staff of NCCI would like to thank you in advance and we look forward to seeing you all in September!

Wednesday, August 29, 2018

Straw Ban Followup ... Action Needed

As previously discussed, the City of Plattsburgh is studying the possibility of a ban on disposable plastic straws. This is part of a growing nationwide trend ... a popular, seemingly simple way to respond the serious problem of mass plastic waste, particularly in the world's oceans.

The problem is that many people with disabilities rely on plastic straws to be able to drink, at home and in restaurants in the community. The North Country disability community needs to speak up now, and make sure that whatever ordinance is passed does not unduly burden disabled people, either by making access to straws more difficult and expensive, or by socially stigmatizing their use.

Click below to read more about what banning plastic straws means for people with disabilities:

The Problem With Banning Plastic Straws

City councilors have said they will take the needs of people with disabilities into account, and they are currently gathering feedback on the idea through an online survey. Please take a few minutes to fill out the City's survey on banning plastic straws. Click here to take the survey, it will close on September 30.

Friday, August 24, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media.

You can always visit NCCI on Facebook and Twitter at the following links:


New content is added every day.

This week - August 18-24, 2018:

Hannah Raskin Hraskin, The Post And Courier - August 22, 2018

A fascinating bit of reporting on restaurant accessibility.

Connor Sheets, Alabama.com - August 13, 2018

The “mental incompetence” laws are different in every state, and lot os people with disabilities are denied the right to vote and they and their families don’t even realize it.

Ashley Welch, CBS News - August 16, 2018

Updated statistics, and a reaffirmation that people with disabilities are not a tiny, niche minority.

Friday, August 17, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media.

You can visit NCCI on Facebook and Twitter at the following links:


This week - August 11-17, 2018:

Money Diaries, Refinery - August 8, 2018

Followup story:

Anabel Pasarow, Money Diaries, Refinery - August 9, 2018

These two stories present one disabled woman’s “Money Diary,” to illustrate how someone with a disability who is ON disability copes financially. It’s good to see think kind of thing in a publication that doesn’t specialize in disability stories.

Kiana Myers, Press-Republican - August 14, 2018

This is an unusual type of “human interest” disability story, in that it has elements of sympathy, but is essentially empowering, as she is engaging with disability issues in the community, not just her own personal struggles.

Kathleen Downes, The Squeaky Wheelchair - August 15, 2018

Kathleen is a really good disability blogger. This post really conveys the difficulty people with significant physical disabilities have in trying to be active in the community, and how even when you can get help, it’s often a mixed bag.

Friday, August 10, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media.

You can visit NCCI on Facebook and Twitter at the following links:


This week - August 4-10, 2018:

Andrew Pulrang, NCCI Blog - August 10, 2018

This could be the next big local disability advocacy issue, and it’s got many very interesting dimensions.

Jordan Ran, Kaiser Health News / PBS News Hour - July 13, 2018

A nationwide trend with local implications.

Organization and website.

Website home for an innovative and consumer-centered youth transition program. The site includes lots of helpful and usable planning tools.

Bonus!

Emily Ladau and Kyle Khachadurian, The Accessible Stall Podcast - August 7, 2018


This disability-themed podcast discussed the “I’m Determined” program in depth, and includes interviews with two of the program’s youth leaders.

The Problem With Banning Plastic Straws

Photo of five different colored bendy plastic straws
The City of Plattsburgh has been asked to institute a ban of disposable plastic straws, and several Council members are open to discussing it in a way that could lead to some kind of official ban.

Elizabeth Izzo, Sun Community News - August 8, 2018

This is part of a growing nation-wide trend ... a popular, seemingly simple way to respond the serious problem of mass plastic waste, particularly in the world's oceans. However, one important consideration has been consistently overlooked, and when brought up, has been largely dismissed, sometimes rather harshly.

The problem with banning plastic straws is that many people with significant physical disabilities depend on them to drink liquids every day. It is a basic and indispensable accessibility tool, with no replacement currently available that is durable, safe, and affordable. The disability community has spent the last several weeks trying to inform people about this problem, and help craft good-faith solutions that address the environmental problem while meeting the needs of people with disabilities.

One solution that might work for Plattsburgh is instead of banning plastic straws completely, to ban restaurants from handing them out without being asked ... while at the same time allowing them to continue to carry plastic straws for any customer to request.

It would be important to allow this "on request" provision not just for disabled people -- because having to make a “special” request stigmatizes disabled people. Some servers might be nice about it, but others might think it’s okay to question the disabled customer, or act like it’s lazy, selfish choice, or an annoyance. Disabled people are often treated poorly when they have to ask for special assistance, or even legally required and sensible accommodations. Even using handicapped parking can subject us to glares if we don’t “look disabled enough.”

As for using alternative types of straws:


Just about all alternative currently available have problems. Paper straws break down with hot beverages. Metal and other rigid material straws can cause injury. The reason some disabled people need straws is that they have difficulty controlling their hand and head movements. If a plastic straw pokes you in the face because of twitch or tremor, it’s no big deal. If a metal straw pokes you it can hurt you. Some people also bite down on the straw to control it, and a metal straw is bad for that, while plastic straws both give and hold up. And straws that bend are often critical. In fact, plastic bendy straws were originally invented for hospitals, for patients who couldn’t drink independently from a cup.

This all sounds very nit picky and particular to people who don’t have this kind of disability, but they are real issues.

It’s not just about disabled people who may be customers already, it’s that a straw ban becomes yet another barrier, a reason why a significantly disabled person might choose to stay at home, because being “out” in the community is just that little bit more uncomfortable. It’s another way to feel unwelcome, like a “problem.”

That’s not a social condition Plattsburgh should be contributing to.

We are asking that anyone who can talk about direct experience of using plastic straws for disability-related reasons let us know if they are willing to speak out on this proposal and possible alternatives. You can contact us through our website: www.ncci-online.com, or by calling us at 518-563-9058.

For further reading on this issue:

Karin Hitselberger, Washington Post - July 12, 2018

Alice Wong, Eater - July 19, 2018

Maria Godoy, National Public Radio - July 11, 2018

Friday, August 3, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media … actually two articles and one video.

You can visit NCCI on Facebook and Twitter at the following links:


This week - July 27 - August 3, 2018:

Rabbi Ruti Regan, NBC News - July 31, 2018

A very good explanation of the problems with subminimum wages and sheltered workshops.

Sinead Burke, British Vogue - August 1, 2018

A fashion editor discusses coming to terms with her disabilities and how others view her.

3. How To Support Your Aspie Friend (tips for partners, parents and friends of aspies)
Aspergers from the Inside - April 27, 2018


Great advice for how family, friends, and coworkers can support autistic people. The video also points towards a more positive way of understanding autism.

Friday, July 27, 2018

Three Links This Week: ADA Anniversary

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media. This week, it’s three videos, all related to the Americans with Disabilities Act, which was passed 28 years ago this Thursday, July 26.

You can visit NCCI on Facebook and Twitter at the following links:


This week - July 21-26, 2018:

1. Google Impact Challenge: Disabilities | ADA 25th Anniversary


Video made thee years ago, on the origins of the ADA and the idea behind it.

2. Drunk History - Judy Heumann Fights for People with Disabilities


A humorous but accurate look at the biggest disability activism effort before the ADA: the 504 Protests.

3. Jennifer Keelan | The Capitol Crawl


One of the key moments in the movement to pass the ADA.

Thursday, July 26, 2018

How My Learning Disability Has Shaped How I View Writing

Gemma Tendrich
Guest Blogger

I love writing, the way you can use a few well placed words to describe the indescribable, how you can light up someone's imagination or move emotions with a few lines of ink on a page. But before that, my love lay with storytelling. Because for me, while storytelling came naturally, writing did not.

It was third grade when I was diagnosed with a learning disability that affected the way I processed reading and writing compared to other kids. It was strange for me to learn at the time. I had always loved books, I still begged my mom to read to me every night and she would write out the elaborate tales I would dictate to her and staple them together into makeshift books. It had never occurred to me that I was behind my peers when it came to reading and writing, or that loving either meant being able to read by myself or get the words down on paper with my own hands.

After I was moved into Special Education class for language arts, it became clear that others didn’t see my love for storytelling the same way I did. Other teachers would be angry that I couldn’t keep up with the group when writing journals, or for paraphrasing the notes in a group project to keep up with my partners. Kids who I had previously called friends teased me for having my mom still read to me, saying it made me a baby. It was almost like I wasn’t allowed to love reading and writing because of my learning disability.

The strange part about it was that the assumptions that others had of the kids in the special education rarely fit with the reality of what I saw. Sure, the other kids and I had trouble reading by ourselves, we would misspell words often and get frustrated at times that what we wanted to write was slow to translate from mind to paper. But all of us loved reading and telling stories. We were excited whenever our teacher would read us the next chapter of The Phantom Tollbooth, or when we got to make our own fictional diaries in the style of the Dear America books. None of us hated language arts like everyone else thought we did, we just needed help to catch up with the rest of our grade.
It was the encouragement of my Special Education teacher that started me on the path towards becoming a writer. But I would be lying if I said it wasn’t a frustrating path at times. While my love of writing and reading never wavered, through elementary, and even high school and college, I faced people who thought that me having a learning disability meant I could never be a writer, and that my passion was misplaced.

In December I will be graduating with bachelors degree in Writing Arts and Literature. My learning disability does not determine my interests, skills, or talents, but it has taught me to view reading and writing differently than some. I still see people roll their eyes at those who stumble over pronunciations when they read out loud, those who don’t understand how someone who wants to be a writer still struggles to spell “simple” words. To me, there is never a need to put someone down who is trying to read or write because it isn’t “correct” or they way you do it. I do not write despite my disability. It is a part of how I write, and it will never stop me from loving what I do.

Gemma Tendrich is currently a student and SUNY Plattsburgh where she studies Writing Arts and Literature. Originally from New Jersey, Gemma now calls Plattsburgh New York home. She has experience living with depression and anxiety as well as a learning disability and tries to incorporate aspects of these experiences into what she writes.

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This is part of a monthly series of guest blogs. Each month NCCI will choose up to 2 submitted blog posts from North Country writers on disability-related topics. This is a paid opportunity. Click here for more information.

Friday, July 20, 2018

Three Links This Week

Closeup picture of a monthly calendar, focused on a single week

Links to three articles shared in this week’s NCCI social media. You can visit NCCI on Facebook and Twitter at the following links:


This week - July 14-20, 2018:

Alice Wong, Eater - July 19, 2018

A very personal perspective on plastic straws and accessibility.

Ari Ne’eman, People’s Policy Project - July 5, 2018

Making the case that support workers who assist people with disabilities should be better paid and more highly regarded than they are in today’s economy.

Andrew Pulrang, Center for Disability Rights Blog - July 19, 2018


Disability-related questions you can ask candidates for Congress.