Friday, February 15, 2019

Three Links

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

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

Facebook:  https://www.facebook.com/ncciplattsburgh/
Twitter:  https://twitter.com/NCCIPlatts

New content is added every day.

#ThingsDisabledPeopleKnow is Necessary Because Realistic Disability Representation is Scarce
Imani Barbarin, Rooted In Rights - February 6, 2019

Twitter hashtags are kind of a cliche, but they are still sometimes useful and even inspiring. This is a great example of how Twitter can foster real sharing between people with disabilities.

For People With Disabilities, Navigating Can Be Difficult In Wintertime
Dave Lucas, Northeast Public Radio - February 4, 2019

Another take on a familiar North Country accessibility issue.

The 2019 New York State Disability Priority Agenda
NCCI Blog - February 11, 2019

Our blog post linking to this year’s statewide advocacy agenda. It’s a good, quick way to get up to date on what’s happening in Albany and what the disability community wants.

Monday, February 11, 2019

The 2019 New York State Disability Priority Agenda

New York Association on Independent Living

Staff from the North Country Center for Independence are in Albany today to meet with legislators and advocate for better disability-related policies in New York State. As a member center in the New York Association on Independent Living, (NYAIL), NCCI will be focusing our broader advocacy 2019 on the issues outlined on the pages linked below:

NYAIL 2019 Legislative Disability Priority Agenda
Policy changes we want to see in New York State.

NYAIL 2019 Budget Disability Priority Agenda
New York State budget steps we want to see.

The following documents provide additional background on the current state policies and trends that determine our goals for 2019:

NYAIL Legislative Report Card 2019
An assessment of past promises and current New York State disability policy.

NYAIL Budget Report Card 2019
An analysis of how the current New York State budget addresses disability issues.

NYAIL’s 2019 Budget Priorities Letter to Governor Cuomo
Our message to Governor Cuomo for 2019.

Friday, February 8, 2019

Three Links

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

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

Facebook:  https://www.facebook.com/ncciplattsburgh/
Twitter:  https://twitter.com/NCCIPlatts

New content is added every day.

Many shelters can’t handle domestic-violence survivors with disabilities
Maria Polletta, Arizona Republic - February 4, 2019

This has been a chronic accessibility problem for years. It’s interesting to note that the shelter director quoted says the problem is they didn’t know who to call. There are ILCs like NCCI in every state ready to help people who want to improve accessibility!

Episode 68: Wally the Alligator and Sensationalism
Emily Ladau & Kyle Kachadurian, The Accessible Stall Podcast - February 5, 2019

A very interesting audio discussion, not just about what “counts” as a “service animal,” but whether disability issues are well served or distorted by seemingly “outrageous” disability stories.

Lawmakers Call For End To Subminimum Wage
Michelle Diament, Disability Scoop - February 5, 2019

More details on the new Senate bill to phase out subminimum wage: the Transformation to Competitive Employment Act, or S. 260.

Friday, February 1, 2019

Three Links

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

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

Facebook:  https://www.facebook.com/ncciplattsburgh/
Twitter:  https://twitter.com/NCCIPlatts

New content is added every day.

5 ways to protect the confidentiality of counseling clients with intellectual and developmental disabilities
Rose Reif - January 23, 2019

A really good article on confidentiality in disability services.

Experiencing an Endometriosis or Fibromyalgia Flare
Allison Jonergin, NCCI Blog - January 29, 2019

Guest blog from Allison Jonergin.

Chairman Scott, Senator Casey, and Congresswoman McMorris Rodgers Introduce Bipartisan Bill to Help Workers with Disabilities Transition to Competitive, Integrated Employment
U. S. House Education & Labor Committee - January 31, 2019

A new bill in Congress that would phase out subminimum wage.

Tuesday, January 29, 2019

Experiencing an Endometriosis or Fibromyalgia Flare

Allison Jonergin
Guest Blogger

It’s hard to talk about flares. While they’re unfolding, I’m not carving intricate memories, I’m focused on my next breath. Then suddenly they’re over, though full days have passed. It feels insincere to talk about it when it’s not actually happening.

A sufferer of chronic pain, I don’t have pain-free days. Whereas most days press my limits, during flares I occupy the losing side.

Guest blogging logo
I remember my Dad urging me, “Now’s not the time to be brave,” while waiting to see the doctor in the emergency room. The pain was not nearly as severe as it had been moments prior. It was still the worst pain I’d experienced in my life, but the throbbing wound couldn’t compare to the impact of the bullet. Except it wasn’t a bullet or a visible flesh wound, but internal bleeding caused by lesions of endometrial tissue swelling in unison with my endometrial lining, located in the uterus, growing to receive a fertilized egg. And, when no such egg arrived, it was time to break away and leave my body as my period. Except these endometrial tissues don’t belong outside of the uterus, and they were growing on organs throughout my pelvis and abdomen. Trapped, the tissues bled until fluxes in my hormone levels instructed them to stop. My options were hormone treatments or surgery. I would need several rounds of both.

The doctor didn’t tell me this that night. Like many women, my endometriosis was going undetected. I waited three years after the onset of my first symptoms to be diagnosed.

I’m fortunate to be a success story. Two years after that emergency room visit, I underwent a total hysterectomy, removing also my fallopian tubes and one ovary. While there is no cure for endometriosis, I’m no longer having surgery after surgery to remove endometriosis lesions. I still experience pelvic pain – thanks mostly to scar tissue – especially when my remaining ovary decides to ovulate.

Fibromyalgia, on the other hand, is an ache that runs deep into my muscles; it clenches my bones and joints in vice grips; it sends supercharged shockwaves down my limbs like a rogue sparking electric wire; it lights entire sheets of skin on fire from within; it furnishes my wrists and ankles with cement blocks, exhausting my physical strength.

This sort of suffering doesn’t build character; it breaks it.

In A Farewell to Arms, Ernest Hemingway said, “The world breaks everyone and afterward many are strong at the broken places.”

Broken is exactly how I feel in the midst of a flare. I don’t have the energy to speak, or even to nod or smile. I’m taking shallow breaths because my rib cage feels too heavy to lift. I can’t hold myself upward, the weight of my muscles, organs and fatty tissue slung over my skeleton like a wet towel. None of my movements feel natural, my shirt rubbing like sandpaper against my skin. I’m dragging myself, with not a single muscle cooperating in carrying the load.

I’m tapped out. This must be what dying feels like, I think. But around me, smiling faces are speaking and asking me questions. They don’t see the light leaving my eyes.

Every word my ears involuntarily hear siphons the last drops of energy from my tank.

Hemingway went on to write, “But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially.”

So in my darkest moments, I remember that I have braved long nights before, and I’ve lived to see the sun rise. To break means I am still alive.

More Blogs by Allison Jonergin:

Friday, January 25, 2019

In Memoriam: Cindy Bryan

Dear Friends,

It is with great sorrow that I must inform you of the passing of a great woman, a fellow colleague and friend who has meant so much to the North Country Center for Independence and to this community. Cindy Bryan was a tireless worker who was absolutely devoted to NCCI and especially to the consumers that she served. Cindy was a giver and she carried the weight of the economic injustice that she saw daily on her shoulders. Cindy was NCCI’s Medicaid Facilitated Enroller for the aged, blind and disabled but she did so much more. She was an incredibly skilled finance person and acted as a mentor for both the Executive Director and Financial Director of the agency. There wasn’t anything she wouldn’t do to help her colleagues. She made people’s lives better. Although we are greatly diminished by her loss, I know that she is encouraging us from the next life to keep on fighting and working for the people that we serve. Let us always remember her as a person who was devoted to making the world a better place. Cindy, thank you for your service, thank you for touching our lives, we will miss you, good bye for now.

To Cindy’s family, we send our deepest sympathies. Thank you so much for sharing her with us. She meant the world to this organization and to the people she helped.

Robert Poulin
Executive Director

Friday, January 18, 2019

Three Links

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

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


New content is added every day.

Courtney Cole, Rooted In Rights - January 11, 2019

A critical look at the film itself, the weird social phenomenon, and how both related to peoples’ perception of blindness.
Alison Green, Ask A Manager - January 14, 2019

It’s good to see an advice program that doesn’t specialize in disability getting a disability issue right!

Ace Ratcliff, Eater - January 16, 2019

A fresh take on a familiar topic.