Weekly Disability Reading List

Links to three disability-related articles shared last week on NCCI social media. Don’t forget, 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 posted every day.

It’s not just the Costco shooting. Disabled people are often killed by police
Marie Myung-Ok Lee, Los Angeles Times - June 19, 2019

This is a risk and a problem that everyone should take seriously.

Not one 2020 candidate has a website that is accessible to the blind
s.e. smith, Vox.com - June 26, 2019

Great work done by a National Federation for the Blind chapter, analyzing Presidential candidate websites. The article also includes a good overview of how the upcoming elections are relevant to people with disabilities.

CBS Signs Pledge to Audition Actors With Disabilities
Rebecca Sun, Hollywood Reporter - June 19, 2019

An important step in a positive trend.

Looking Too Well to Be Sick, Feeling Too Sick to Act Well

By Allison Jonergin

When I begin to feel a bit better – yes, even chronically ill people are allowed to have good days – there is a lot of catching up to do. Sometimes it feels I have just enough time to come up for air before being washed down again.

Even when I’m feeling my best, the majority of my time is spent resting at home, sitting at appointments, standing in line at the pharmacy, and taking medicine.

I wish my schedule could be freed to do fun things, and I’d settle for being able to do productive things like housework. But if I push myself beyond my limits, even on good days, my symptoms will surge and I’ll suffer a setback.

It takes a great deal of work to tend to my basic needs. In fact, if I don’t care for myself adequately, I’m stripped of my ability to even perceive small joys around me.  Feeling exhausted, in pain, and impatient can turn into a vicious cycle wherein I take in only the negative and thus have only negativity to offer.

I can feel disgruntled about waiting over an hour for an appointment, or I can feel thankful I felt up to driving there. I can feel depressed that I spend more time with my doctors than my friends, or I can feel thankful I have a team of treating physicians who know and understand my diagnoses and symptoms. I can allow my self esteem to suffer for needing to rely heavily on my family for support, or I can be immersed in the love I feel when their support seems to never diminish, no matter how many times I must drop my bucket into their well. I can feel discouraged when I have no energy left after attending these appointments, or I can accept the sober truth that my chronic illnesses would be even less manageable if I stopped going to them at all.

I must diligently carve out time for rest and recuperation, as well as time to gently exercise my tender limbs, time to make healthy meals and time to just be. It’s not realistic to manage doing all of these things every day, but I can rotate my priorities so I take the best possible care of myself.

I’m not ashamed of my schedule, but I struggle to communicate that missing a nap isn’t like forgetting to drink my eighth glass of water. It’s more like not eating for four days in a row. It’s more like day 11 of the flu. It’s more like seeing stars after getting punched in the face. Brain fog clouds my windshield completely, and I feel like I’m trying to distinguish landmarks in whiteout conditions.

I make silly mistakes. I trip over my own feet. I get flustered talking about even the most familiar topics. I pace in and out of rooms, forgetting why I went into them in the first place. I feel like a stranger in a foreign land who can’t remember what she wants to say long enough to translate it into the local language.

My only source of relief comes in the form of a deep sleep.

It’s frustrating to sleep the afternoon away, but I know the importance of ensuring my body gets the rest it needs, even on good days.

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.

Clinton County Transportation Meetings

The following is a notice from the Clinton County Planning Department about upcoming public meetings and hearings on proposed changes in Clinton County Public Transit (CCPT):

Thursday, June 27, 1-3 PM
Public Information Meeting
First floor meeting room, Room 103, Clinton County Government Center
137 Margaret Street, Plattsburgh

Wednesday, July 10, 7 PM
Clinton County Legislature Public Hearing
Legislative Meeting Room, Clinton County Government Center
137 Margaret Street, Plattsburgh

Clinton County Public Transit (CCPT) is considering bus route changes for implementation on August 12th, 2019. The proposed changes include elimination of the West End bus route and elimination of the 8:53 pm run of the CCC Seasonal bus route, among other changes.

CCPT will be hosting a public information meeting on Thursday June 27th from 1:00 pm to 3:00 pm in the first floor meeting room, Room 103, of the Clinton County Government Center; 137 Margaret Street; Plattsburgh, NY 12901 to discuss the proposed service changes and receive public input. This meeting is open to the public and all are welcome and encouraged to attend and participate.

Those who are unable to attend in person but would like to attend by way of conference call can call 1-712-451-0011 and use access code: 853408

If you cannot attend this meeting but you would like to give input, provide written comments, or ask questions; please contact:

James Bosley, Planning Technician
Clinton County Planning Department
135 Margaret Street Suite 124
Plattsburgh, NY 12901
518-565-4713
james.bosley@clintoncountygov.com

In addition to this public meeting, there will be a public hearing at the session of the Clinton County Legislature when bus route changes are voted on. It is anticipated that the bus route changes being proposed will go before the Clinton County Legislature at their 7:00 pm session on Wednesday July 10th and the public hearing will be at the beginning of that meeting.

Clinton County does not discriminate on the basis of race, color, national origin, sex, religion, age or disability in employment or the provision of services. In compliance with the Americans with Disabilities Act, special accommodations, within reason and upon request at least forty-eight hours in advance of the public meeting, will be provided to persons with disabilities. Please contact James Bosley, Planning Technician, at 518-565-4713 or by email at James.Bosley@clintoncountygov.com to request a special accommodation for the meeting.

For anyone who would like travel training to better understand the CCPT routes/services and how to use them, please contact James Bosley (contact information is above) and arrangements will be made for travel training.

Weekly Disability Reading List

Links to three disability-related articles shared last week on NCCI social media. Don’t forget, ou 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 posted every day.

It’s Perfectly OK To Call A Disabled Person ‘Disabled,’ And Here’s Why
Brittany Wong, Huffington Post - June 14, 2019

A really clear and up to date explanation of how and why disability terminology is still evolving.

Charlestown mother investigated for voter fraud after helping disabled son vote
Tim Camerato, Valley News - June 11, 2019

All it takes is a bit of suspicion and a nosey poll worker to threaten voting rights for people with disabilities.

Disabled LGBT+ young people face a battle just to be taken seriously
Alex Toft, The Conversation - August 8, 2918

This article is more than a year old but it’s worth reading, especially during Pride Month.

Action Alert: Money Follows The Person

The following advocacy alert comes from the Center for Public Representation:

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Call your Senators now to fund the MPF Program

Last night the House passed H.R. 3253, the Empowering Beneficiaries, Ensuring Access and Strengthening Accountability Act.  This bill funds the Money Follows the Person program through the Fiscal Year 2023. It also extends the HCBS spousal impoverishment protections through March 31, 2024. Thank you for your hard work in advocating to #FundMFP.

We now need the Senate to act! Join our national call-in day and ask your Senators to #FundMFP.  We have a Facebook event with talking points to make it easy for you to call and spread the word or instructions are below. Together we can get Congress to extend this critical program that has helped more than 80,000 people move back to the community!

To Call your Senators:

1. Call the Capitol Switchboard at (202) 224-3121 (Voice) or (202) 224-3091 (TTY) and ask to be connected to your senators. 

2. Repeat. You can use this easy tool to find your members of Congress.

Easy Call Script:

Hello, this is [Name]. I’m a resident of [Town, State].

I am calling to ask Senator [INSERT NAME] to fund the Money Follow the Person (MFP) program.

MFP has enabled over 90,000 older adults and people with disabilities living in institutions to transition back to their communities. MFP is fiscally responsible: it has improved the quality of life for thousands of individuals while saving states money. Congress passed stop-gap funding for the program in January 2019, but those funds will run out in September 2019.

I am asking [Senator’s Name] to cosponsor and support the EMPOWER Care Act S. 548 and H.R. 3253 passed by the House and reauthorize Money Follows the Person Program.

Thank you for taking my call!

[IF LEAVING A VOICEMAIL: please leave your full street address and zip code to ensure your call is tallied]

[Optional Add On]

Personal stories are the most effective form of advocacy. Talk about why Money Follows the Person is important for you or someone you know and love.

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Our U.S. Senators from New York are:

Sen. Kirsten Gillibrand
@SenGillibrand

Washington DC Office
478 Russell
Washington, DC 20510
Tel. (202) 224-4451
Fax (202) 228-0282

North Country Office
PO Box 273
Lowville, NY 13367
Tel. (315) 376-6118
Fax (315) 376-6118

Sen. Chuck Schumer
@SenSchumer

Washington DC Office
322 Hart Senate Office Building
Washington, DC 20510
Phone: (202) 224-6542
Fax:  (202) 228-3027

Albany Office
Leo O'Brien Building, Room 420
Albany, NY 12207
Phone: (518) 431-4070
Fax:  (518) 431-4076

Weekly Disability Reading List

Links to three disability-related 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 posted every day.

People With Disabilities Face Challenges Campaigning
Abagail Abrams, Time - June 12, 2019

This is an especially well-written story about the struggles and barriers encountered by people with disabilities running for office, and a new effort to help.

I’m Not Sorry If My Disability Makes You Uncomfortable
Anna Zivarts, Rooted In Rights - June 9, 2019

It’s one of the most insidious and exhausting ways we as disabled people tend to sabotage ourselves … by one way or another apologizing for our disabilities.

What Ali Stroker’s Historic Tony Win Means for Wheelchair Users Like Me
Judy Heumann, Hollywood Reporter - June 10, 2019

One of the early founders of the modern disability rights movement talks about why disability representation in media is so important.

Weekly Disability Reading List

Links to three disability-related 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 posted every day.

Designing for accessibility: From Frida Kahlo’s corsets to Franklin Roosevelt’s leg braces
Eleanor Cummins, Popular Science - March 1, 2019

Popular Science Magazine takes a look at prosthetics and adaptive devices used by some of the most famous people with disabilities in history.

I’m a Disabled Teenager, and Social Media Is My Lifeline
Asaka Park, New York Times - June 5, 2019

With all the concern and disdain of social media going around … much of it justified … it’s also important to recognize how important and valuable it is for some of us, particularly people with disabilities.

Club for Adults With Disabilities Fosters Love, Inclusion
Yvonne Wenger, The Baltimore Sun - June 2, 2019

This club for people with disabilities has so many pros and cons that we could discuss it for a week. Is it a joyous thing to be simply appreciated? Or is it yet another segregated program that ignores the question of how “regular” clubs can be made accessible? And based on the tone and content of the article, there’s a thread of paternalism that seems to run through the whole project. It’s very interesting!

Daring To Hope

By Allison Jonergin

Because of my health struggles, I know worthlessness, uselessness and emptiness. I know sorrow, frustration, loneliness and grief. I know the taste of desperation and the flood of fury.

I also know the power of a kind word, a helping hand, a second wind, or a song playing over the radio.

I know the power of someone choosing to employ empathy when one could choose the easier path of sympathy.

I know the power I yield inside to shield myself from feelings of worthlessness and to nourish feelings of resilience and grit.

I can succumb to feeling powerless; I can project my worst anxieties; I can expect the worst outcomes and allow myself to be convinced every day will be the same.

But hope inspires me to believe. I have faith in my ability to change my day, my world and my life with the choice to seek out happiness. When it is nowhere to be found, I choose to trust that it will manifest itself in my heart if I do the painstaking work of taking care of myself physically, mentally and emotionally. If I reach outside of myself, outstretch a hand to a stranger who could use a smile just as badly as I could, I can create a life worth living, loving and sharing with others.

When I allow myself to feel only pain, I am alone, no matter how many people care for me and insist on showing me so. Pain holds me prisoner, but I have the power to shake loose the door of my cell and walk out of it. The chains may remain shackled around my ankles, but mentally I can go anywhere and feel anything I desire if I trust and commit to doing the work every day, not just when I feel like feeling better.

The work looks different for each of us. I’ve found mine begins with respecting myself as well as my limits, which fluctuate throughout the day and the week. When I can trust that I’ll take care of myself first and foremost, I’m freed to love and care for others around me, feeling safe in the belief that when I’m tapped out, I’ll tap out. Until then, I focus my attention purposefully on the things I can do for myself so that I have more to give to others.