Sunday, October 28, 2018


Allison Jonergin
Guest Blogger

Growing up, I had this dream, this hope, in my mind of the kind of person I’d be despite any struggles I might face.

I always hoped I’d be brave. 

Before I became sick, bravery used to mean something very different.

It meant standing up for ideals, helping the needy and always being the bigger person. It meant accomplishing what I set out to accomplish, no matter how hard I had to work. I thought there would be no hurdle I couldn’t overcome with enough dedication, commitment and willpower. 

I grew up reading books about ordinary boys and girls defeating monsters and becoming heroes, and I’d be lying if I said I didn’t want to be the heroine in my own story. 

But what do you do when the monsters go to bed with you, wake up with you, eat with you and weep with you? How do you continue to be brave, every single day, when the fight is no longer a battle culminating in a glorious victory, but an extended offensive of attrition warfare?

I’ve had to bury that dream, kiss goodbye those hopes, and console the sweet girl inside me who was innocent enough to believe she could take on the world’s problems when in reality I’m struggling just to manage my own.

Because even on my best days, I am still bound to this body, and all I know is pain: relentless, all-consuming, unforgiving pain. Then there’s the mental anguish, the exhaustion, discouragement, frustration and sadness to reckon with. Not to mention the laundry list of other symptoms that keep things interesting.

When you begin each day and sometimes each task with the prerequisite of having to talk yourself into fighting to live at all, it makes for a long day.

I am alone in this fight, and yet I am never free from my monsters’ grips. They slither into the most intimate parts of my life and make a home, reminding me my body is the battleground in a war I fight behind closed doors.

When I wake up in the middle of the night writhing in pain, when I cry upon waking at the thought of having to drag my tender body into the shower, when I sit on my bed and talk myself into taking my medicine, I am reminded that no one can take over fighting for me when I get tired. 

Pain is the loneliest company I’ve ever kept, but it’s loyal. Pain doesn’t discriminate. It doesn’t care what kind of day you’ve had or how much work you have left to do. 

And so I convince myself to carry on and forgive myself for the items I never seem to cross of my to-do list.

Let’s face it. I won’t change the world. 

On my worst days, I don’t even change my socks.

My disability took any last shred of hope I had that I would be brave enough to overcome my chronic illnesses and effect any real change in this world. My disability has forcibly flipped my priorities, leaving little to no energy for the dreamer in me who wanted to paint one small piece of the future.

And so I tiptoe over the graves of the dreams I’ve buried along the way, and I hope somehow I make that little girl inside me proud simply for having the courage to keep going.

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.


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, October 26, 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 - October 20-26, 2018:

Three election-related pieces for people with disabilities.

1. Voting Resources
NCCI Blog - October 25, 2018

2. 2 Weeks Until Election Day: ENGAGE YOUR FRIENDS AND FAMILY!
American Association of People with Disabilities - October 23, 2018

3. Break down barriers to voting with these tools!
Autistic Self Advocacy Network

Thursday, October 25, 2018

Voting Resources

"Vote" logo with wheelchair symbol

Election Day for the 2018 Midterm Election is Tuesday, November 6. Here are some more voting resources for people with disabilities:

Voting Rights Subcommittee - National Council on Independent Living

Disability Issues Guide - American Association of People with Disabilities

Voting Resources - Autistic Self Advocacy Network

Plain Language 2018 Voter Guide - Bazelon Center for Mental Health Law

Find Your Polling Place - National Association of Secretaries of State

Polling Site Accessibility Checklist - U.S. Department of Justice, Civil Rights Division

Election Polling and Forecasts -

You can always contact us here at NCCI at 518-563-9058, for assistance related to voting.

Friday, October 19, 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 - October 13 - 19, 2018:

NCCI Blog - October 14, 2018

Via Norman Karp, Social Security figures and thresholds for 2019.

Tanya Marlow, The Guardian - October 11, 2018

Always a good reminder for parents …

Hannah Brown, Rooted In Rights - October 11, 2018

“Awareness” can be a slippery and rather empty idea when disability is concerned.

Sunday, October 14, 2018

Social Security COLA Updates

Illustration of a green dollar sign and white puzzle pieces
Click here for a PDF document that lists the new Social Security Cost Of Living Adjustment (COLA) for 2019. Here are just a couple of important numbers to notice for the Social Security Disability Insurance (SSDI) and the Supplemental Security Income (SSI) programs. There will be a 2.8% increase in benefits this year. I will keep everyone up-to-date as soon as Medicare releases their numbers for 2019.

Social Security Disability Insurance (SSDI)

Substantial Gainful Activity (SGA) threshold:

Non–blind: 2018: $1,180/m 2019: $1,220/m … increase of $40.
Blind: 2018: $1,970/m 2019: $2,040/m … increase of $70.

Trial Work Period(TWP) threshold:

2018: $850/m 2019: $880/m

Supplemental Security Income (SSI)

Federal Payment Standard:

Individual 2018: $750/m 2019: $771/m … increase of $21.
Couple: 2018: $1,125/m 2019: $1,157/m … increase of $32.

SSI Resource Limits:

Individual: 2018: $2,000 2019: No change.
Couple: 2018: $3,000 2019: No change.

The linked document goes into more detail about retirement, tax rates and other federal benefits. If anyone has any questions please don't hesitate to ask. You can call me at 518-563-9058 Ext. 110, or send me an email at:

Friday, October 12, 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 - October 6 - 12, 2018:

National Council on Independent Living

Great election and voting resources for people with disabilities and Independent Living Centers.

NCCI Blog - October 7, 2018

This is an attempt to address some of the most common barriers to voting for people with disabilities. 

Sasha Flare, Rooted In Rights - October 1, 2018

Pretty gritty and real … but also kind of funny and in a way inspiring.

Sunday, October 7, 2018

Voting Q & A

Large blue “VOTE” logo, in which the “O” is part of a stylized wheelchair symbol’s wheel

How do I check my registration and register to vote? What is the deadline?

Click here for a website where you can check your registration status, and register to vote online in New York State. You can also register at most government offices, and at most human services agencies, including here at the North Country Center for Independence. Call us at 518-563-9058 if you want to register and need assistance.

- The voter registration deadline in New York is Friday, October 12 for the 2018 Midterms on November 6. Click here to see the registration deadlines in all 50 states.
Photo of several red, white, and blue buttons reading "VOTE"
I don't drive or have a car. How am I supposed to get to the polls?

- The first step is to make sure you know exactly where your polling place is. Click here for a website where you can find out.

- Is it close enough to walk or wheel to? Could you afford to take a cab, just that once, to cast your vote? Call your county transportation department and ask if there is wheelchair-accessible transportation that can take you to and from the polls. You can also call your local Democratic or Republican Party, (whichever you prefer), and ask if they can help you get to the polls.

- If getting to the polls is going to be difficult in any way, it’s best to plan as far ahead as possible so you can make arrangements.

Why is polling place accessibility important? Can't disabled people just vote absentee?

- In NYS, most people with disabilities can get an absentee ballot if they want one. This allows you to cast your vote by mail. And absentee votes are just as valid and counted as votes cast at the polls. Click here for more information on voting by absentee ballot in New York State.

- However, many people prefer to go to their local polling place to vote, the way most voters do, and they have a right to do so. People with disabilities also have an equal right to an accessible polling place where they can independently and privately cast their ballot. All polling places in New York State should have a way for people with mobility, motor, visual, or hearing disabilities to cast their vote.

- If you choose to have someone help you with the voting process, you may. But you cannot be forced by someone else into having help to vote.

Aren't there certain kinds of disabilities that make it impossible or inappropriate to vote?

- In the United States, you don't have to demonstrate any particular level of knowledge or understanding to be eligible to vote. You just have to be a United States citizen and 18 years old or over. That applies to everyone, including people with all kinds of disabilities.

- NYS Law allows judges to rule a person with cognitive disabilities ineligible to vote when it is part of a legal guardianship. However, it is not an automatic part of every guardianship, it can be reversed and voting allowed if appealed, and in general, people have a right to register regardless of their disabilities unless specifically deemed ineligible by a judge.

- The vast majority of people with disabilities are as capable as anyone else of making their own voting decisions.

I don't know much about politics. Wouldn't it be kind of wrong for me to vote?

- One of the core principles of democracy is that you don't have to have a certain level of knowledge or intelligence to have a meaningful right to vote. If your vote isn't especially informed, and cast more on instinct, it is still valuable, and your insights are no better or worse than those of other voters.

- That said, if you feel like you would like to be more knowledgeable, you can change that. You can start by visiting websites about the 2018 Midterm Elections, and then visiting the websites of candidates who will be on your ballot.
Red white and blue sign reading "VOTE!"
Why is it important for people with disabilities to vote?

- People with disabilities are a potentially huge voting constituency. Almost 16 million people with disabilities voted in 2016. Recently, major elections have come down to thousands of votes. In local races, hundreds or even handfuls of votes can make the difference.

- In 2016, 68.3% of voting age people with disabilities were registered to vote, compared to 70.6% of non-disabled people, a 2.3% gap. 82% of registered disabled voters actually voted, compared with 88% of non-disabled registered voters, a 6% gap. (Source: Lisa Schur and Douglas Kruse, Fact sheet: Disability and Voter Turnout in the 2016 Elections).

- Just about all disability-related policy is affected by who is elected to Congress, state legislatures, counties, towns, and village offices … including the scope, quality, and funding of Medicaid and Medicare, Social Security, SNAP and housing assistance, home care, developmental disability services, independent living centers, and civil rights laws like the Americans with Disabilities Act and the Individuals with Disabilities Education Act.

- Who knows better how these and other disability programs should be designed and implemented. Very few lawmakers really know the disability experience. They rely on us not just for our votes, but for our everyday expertise on disability issues. We have the numbers and the knowledge to make a difference. But potential alone doesn’t do anything. First we have to follow through and vote.

The National Council on Independent Living has resources for voters with disabilities. Click here to visit their page.

You can also check an analysis of the races for Congress, every day from now until election day, at these pages: Senate Forecast - House Forecast.

If you are looking for information on current disability issues, visit the following websites:

2018 NCIL Legislative & Advocacy Priorities Booklet

Friday, October 5, 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 29 - October 5, 2018:

Simon Minty and Kate Monaghan, BBC Ouch! - October 5, 2018

BBC Ouch! has been doing great talk radio journalism on disability for years. This one is especially good. It touches on the different layers of stigma attached to “mobility scooters,” and compares attitudes towards disability in the the UK and North America.

s.e. smith, Rooted In Rights - September 28, 2018

A disability angle on the risks of flu season.

De Elizabeth, Teen Vogue - September 27, 2018

Teen Vogue always does great and relevant work when they approach an article on disability.