Wednesday, June 19, 2019

Action Alert: Money Follows The Person

ACTION ALERT in bold white letters on a dark red background

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

==========

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.


==========

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

Friday, June 14, 2019

Weekly Disability Reading List

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

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.

Friday, June 7, 2019

Weekly Disability Reading List

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

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!

Tuesday, June 4, 2019

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.

Guest blogging with white 3 dimensional stick figure writing with a giant penI 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.

Friday, May 31, 2019

Weekly Disability Reading List

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

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.

I’m obese. I want a healthy lifestyle. But it’s often inaccessible to disabled people like me.
Pasquale Toscano, Vox.com - May 27, 2019

Health and weight loss are extremely complicated for people with disabilities, because of inaccessibility, and the extra layers of shaming that obesity can attract.

“We Want Our Freedom,” Declare Disability Advocates to Dems
Ruth McCambridge, Non Profit Quarterly - May 22, 2019

ADAPT is making progress to pass the Disability Integration Act, aimed at making home care available to anyone who needs it and chooses it.

War is hell. Try doing it in a wheelchair.
James Reini, Public Radio International - May 28, 2019

An in-depth look at coping with a disability in the middle of a war zone.

Tuesday, May 28, 2019

By The Numbers: NCCI Services October 1, 2018 - March 31, 2019

The graphics below show data on services provided by the North Country Center for Independence between October 1, 2018 and March 31, 2019. You can click on each graphic to see a larger, easier to read version.

People Served
How many people did NCCI serve? 312 people with disabilities. 72 other non-disabled. 16 families.


Disabilities of People Served
Disabilities of people served: 172 physical. 77 cognitive. 39 mental. 19 sensory.


Services Provided
How many people used each service? 266 information & referral. 172 personal assistance services. 99 advocacy. 76 benefits assistance. 24 accessibility assistance. 40 transportation assistance. 21 peer counseling. 20 housing assistance. 4 other services. xx assistive technology.

Friday, May 24, 2019

Weekly Disability Reading List

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

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.

My Disability Is Not a Burden—But to Convince Potential Dates, I First Have to Convince Myself
Esme Mazzeo, Glamour - May 16, 2019

Sometimes the most difficult ableism to overcome is in ourselves.

Why I will start including accessibility information in my restaurant reviews - The Washington Post
Tom Sietsema, Washington Post - May 10, 2019

Restaurant reviews … and all other types of business reviews … should always include marks for accessibility. It’s kind of incredible that they don’t already.

Follow the Money: The U.S. Budget and You | Autistic Self Advocacy Network
Autistic Self Advocacy Network

This guide to the US budgeting process is part of a series of policy and advocacy guides, most of them written in “plain language” for people with intellectual and developmental disabilities.

Friday, May 17, 2019

Weekly Disability Reading List

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

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 added every day.

My mom, walker and all
McKenzie Delisle, Press-Republican - May 12, 2019

A local woman has written a book for her son about her own disability.

Body behaving badly
Robin Caudell, Press-Republican - May 14, 2019

Another disability-related Press-Republican article, this one on an often misunderstood condition called Ehlers-Danlos Syndrome.

What You Need to Know About Consent and Disability
Spencer Williams, Vice - May 13, 2019

An absolutely crucial concern for people with disabilities, especially those who rely on personal care assistance.

6 Wheelchair Accessible Trip Ideas in New York State
Anna Pakman, Iloveny.com - July 13, 2018

Wonder what it would take to get some recognition for the North Country? It might be a good time to remind local planners that consistent accessibility can be a valuable asset for tourism.

Friday, May 3, 2019

Weekly Disability Reading List

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

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 added every day.

Why disabled journalists should report on disability
Karina Sturm, April 19, 2019

Any journalist should be able to report well on disability issues. But journalists with disabilities tend to have better instincts about what really matters in stories involving disability.

Disabled people need more ramps, not more fancy new gadgets
s. e. smith, Vox.com - April 30, 2019

Technological innovation is great. But inventors need to talk to actual disabled people about what’s important to them. The “coolest” looking gadgets aren’t necessarily any use.

Also, we had 2 guest writers this month at the NCCI Blog:

Let’s Talk About Fatigue, by Allison Jonergin

Mental Illness and Coping in Relationships, by Gemma Tendrich

Tuesday, April 30, 2019

Mental Illness and Coping in Relationships

By Gemma Tendrich

Often, when the topic of handing mental illness in regards to romantic relationships comes up, it comes with the assumption that only one person in the relationship is struggling with mental illness. These discussions seem to focus on how someone without mental illness can help their partner, but rarely do I see advice about relationships where both partners have mental illness. It is a topic that needs to be focused on more, especially in regards to understanding how to mutually support each other in a relationship. This is especially true when it comes to individual coping mechanisms and how they might overlap or conflict.

Guest blogging with white 3 dimensional stick figure writing with a giant pen
Say you and your partner both have anxiety disorders. When your partner has a panic attack they often pace the room and verbally name things around them as a way to ground themselves. However, the way your brain processes anxiety means that the movement and noise of your partner doing this can become over stimulating, causing your anxiety to worsen.

I feel situations likes these are rarely talked about. There are points where two people can have conflicting needs for their mental health that happen at the same time or can feed into each other in ways that worsen the situation. But situations like the one mentioned above don’t mean that there is something wrong with the relationship, or that the coping mechanism someone is using is bad. It just means that those in the relationship need to sit down and have a discussion about their needs when it comes to mental health. Maybe coping mechanisms can be adapted or outside support systems can be brought in. In the above example, perhaps when your partner paces and uses verbal tools to cope you can go into a separate, quieter room as to not get overwhelmed. Or, if your partner needs to talk with someone, but you are too overwhelmed to give them verbal support back, they can call a friend or family member for support.

The important part is to understand how to communicate your needs in a romantic relationship and be willing to listen and adapt to the needs of your partner so that both of you can be happy and healthy together. This is true in every aspect of a relationship, but how mental illness can factor in is something more should be open about talking about.

Let’s Talk About Fatigue

By Allison Jonergin

There are types of exhaustion that are commonplace in the lives of some that I have never experienced. Some parents work long hours and care for young children. Childless, this routine and the accompanying exhaustion is a stranger to me. I’ve seen it, I’ve heard people talk about it, but I’m not getting up in the middle of the night to feed an infant or to change a child’s sheets after an accident.

Guest blogging with white 3 dimensional stick figure writing with a giant penI have chronic fatigue syndrome (CFS). Since it has been around, it has earned new names like systemic exertion intolerance disease (SEID) and myalgic encephalomyelitis (ME), as researchers’ orbit nears the true cause and nature of this disease. Myalgia refers to muscle pain, while that scary looking word means inflammation of the brain or spinal cord. According to the CDC, it leaves one in four sufferers house- or bed-bound at some point (“What is ME/CFS?” 2018).

The headlining symptoms of CFS/ME are fatigue that inhibits one’s ability to carry out the activities one once could and the worsening of symptoms following activities that push one’s energy envelope. The latter is called post-exertion malaise and happens after physical, mental or emotional activity.

Carrying a few items to the cash register feels like frantically turning over a dead engine. At last it guns forward, only to die moments later. But I’m able to coast a ways, and that’s often how I go about my day. Coasting. Turning over. Dying. A trip to the grocery store is an all-day affair, and I always bring backup. I don’t do the driving or even push the cart if I can get away with it. I lift only half the items onto the conveyor belt, then back into the cart, then into the car, then into the house, then onto the countertops, then into the cupboards. I’m hyperaware of every movement I make, feeling my energy levels repeatedly pounding into rock bottom until I finally find myself lying down.

I also experience brain fog, headaches, chills, night sweats, joint pain, the need for excessive sleep without feeling rested afterward, insomnia, chemical and food intolerances, tender lymph nodes and the worsening of symptoms upon sitting or standing.

Sometimes my symptoms will worsen right away, like when I need to rest after walking my dog. Other times I’ll take pride in surviving a busy day, only for the aftereffects to hit me like a truck the next morning.

For now, patients can only be diagnosed after a doctor rules out all other possibilities. More research is needed to develop diagnostic tests and treatment options.

Friday, April 26, 2019

Weekly Disability Reading List

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

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 added every day.

Teaching “Yes Means Yes” Can Make Sex Education More Inclusive for the Disability Community
Sam Kischkel, Rooted In Rights - April 17, 2019

A fresh, personal perspective on sexuality and disability.

Why It Took Me Years To Become A Proud Disabled Woman
Wendy Lu, Huffington Post - April 12, 2019

A good overview of internalized ableism … how we act out shame and embarrassment of our own disabilities … and how we can overcome it.

Demystifying Disability
Kelly Dawson and Emily Ladau, Call Tour Girlfriend Podcast - April 18, 2019

A fun conversation between two disabled women, comparing notes on living with disabilities and how society deals with disabled people.

Friday, April 19, 2019

Weekly Disability Reading List

Closeup picture of a monthly calendar page

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 added every day.

Things to Never Say (or Do) to Your Disabled Co-worker
Imani Barbarin, The Muse - April 14, 2019

Good advice for making all workplaces more friendly for people with disabilities.

90% Of People Think They’re Helping Society By Challenging People Who Don’t Look Disabled, Says Study
Katie O’Malley, Independent - April 15, 2019

Policing who is and isn’t disabled is very common, and one of the most constant frustrations for people with disabilities, especially invisible disabilities.

‘Game Of Thrones’ Finds Fans Among Disability Rights Activists, Too
Neda Ulaby, National Public Radio - July 10, 2017

Whether you’re a fan of this show or not, it’s worth noting how many different kinds of disabilities and disabled characters are in it, and not just in background roles.

Friday, April 12, 2019

Weekly Disability Reading List

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

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 added every day.

How A Devastating Hate Crime Provoked Sinéad Burke’s Powerful New Campaign
Sinéad Burke, Vogue - April 11, 2019

An incredible story of outrageous behavior, and a little person’s effort to change youth thinking about people with disabilities.

Busting the myth that autistic people lack empathy: the community speaks out
Ellen Seidman, Love That Max - April 10, 2019

It’s Autism Awareness Month, but there’s quite a bit of debate of what, exactly, people should be aware of in regard to autistic people. Quite often, this “awareness” amounts to inflating fear of an “epidemic,” or how “broken” autistic people are. But autism is an easily misunderstood set of diverse conditions. And while it poses numerous challenges, some quite profound, listening to what autistic people say and really thinking about what they do is an important first step towards understanding and acceptance.

One of us was a pain patient saved by opioids, the other was addicted to them. We both deserve a solution
Ryan Hampton and Kate M. Nicholson, Los Angeles Times - April 3, 2019

This is a really tremendous and balanced look at the intersection of battling the opioid crisis and the harm to people with genuinely chronic pain that is already happening as a side-effect of the opioid crackdown. Absolutely essential reading.

Friday, April 5, 2019

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:


New content is added every day.

Tim Gilmer, New Mobility - April 1, 2019

This is the second part in a New Mobility magazine series on people with disabilities in the medical profession. The first piece, on doctors with disabilities, is here.

Erin Ivory, WGN 9 Chicago - March 28, 2019

It’s easy to dismiss this as just a cute story, but it’s an example of how people with disabilities can think about their impairments in a completely different way. This is positive thinking, with a mischievous twist.

Melissa Blake, Rooted In Rights - March 26, 2019


Dr. Phil may have been trying to shed light on some of the potential difficulties of relationships where one person is disabled and the other is not. But the way he made his case was incredibly ignorant, and also harmful to anyone with disabilities struggling with their self image and future relationship possibilities.

Wednesday, April 3, 2019

NYAIL Summary of NYS Budget Results

Closeup photo of computer keyboard with one large key labeled "Updates"

The following is a summary of the finished New York State Budget, from the New York Association on Independent Living ...

The budget was passed over the weekend. Now that it has passed, I want to share some updates this morning on our top priorities.

IL funding: The statewide network was allocated a $500,000 funding increase. Clearly this falls short of what we were seeking, but given the difficult budget year, it was an accomplishment to receive an increase at all. Further, now that we have strong support from both Education Chairs, we have momentum we can build on next year.

Consumer Directed Personal Assistance (CDPA) program:

The final language broadens who can be a FI from the proposed language, which limited it to ILCs and FIs who were in operation prior to 2012. It does still include ILCs in the language though as entities who can be FIs. Contracting will be directly with the Department Of Health, as opposed to LDSS offices.

The bill did include some consumer protections, including creating a workgroup, to be formed by May 15th, to do the following:

- best practices for the provision of fiscal intermediary services;
- inform the criteria for the application to be a fiscal intermediary;
- identify whether services should differ for different groups of consumers;
- identify what criteria should be used in reporting; and
- develop transition plans for consumers who may need to transition to a different fiscal intermediary.

As for our primary concern, which was changing reimbursements to a per member per month (PMPM) model, the bill does not address this. Advocates were hoping it would be part of the workgroup’s charge, but it is not. There is apparently a plan to move forward with a PMPM model though, which the Executive already had the authority to implement without approval from the legislature. The plan is for rates to be banded, meaning there is a low rate for people who need 1-4 hours; a higher rate for consumers who need more hours; and a high rate for consumers who need more than 96 hours. We will be confirming those rates with legislative staff today and sharing this with the FIs in our network.

Housing:

Access To Home level funded at $1 million. The funding increase for this program was to come from the Mortgage Insurance Funding (MIF), which did not turn out to have adequate funding to support our increase. We will need to work harder on ensuring the Senate and Executive understand the necessity of providing funding for home modifications.

Office for the Advocate not included in final budget. Though we had strong support in the Senate, we understand there were concerns from the Assembly and Executive which we are working to find out more regarding.

We will send a more thorough update shortly.

===============

Here is an overview of how the rest of our priorities on our Budget DPA did in the final budget.

Health / Medicaid:

Spousal refusal protected! People who have a spouse or child who become sick or disabled and require Medicaid will not have to divorce or institutionalize their loved ones just so they can get the care they require!

Prescriber prevails protected! A doctor will be able to determine the best course of treatment for their patients, as opposed to the managed care organization.

Global cap extended.

The final budget did not include a community-based high needs rate cell or risk adjustment, as proposed by the Assembly and Senate.

The National Diabetes Prevention Program was included.

New York Connects received a $1M increase over two years.

Long Term Care Ombudsman Program level funded.

Elections:

Early voting funded! The budget includes $25M to cover the costs associated with implementing early voting. $14.7M will go toward purchasing software necessary software. This includes electronic poll books, as well as on-demand ballot printers and cybersecurity protections. An additional $10M will reimburse county Boards of Elections for costs associated with implementing early voting. Counties would not have the funds necessary  to implement early voting, so this is big.

Housing:

I already reported that a person’s lawful source of income is now a protected class in NYS Human Rights Law and Access To Home was level funded. As for our third housing priority, the Visitability Tax Credit was not included.

Employment:

Small Business Tax Credit not included.

Meghan Parker
Director of Advocacy
New York Association on Independent Living
155 Washington Ave, Suite 208
Albany, NY  12210
Phone: 518-465-4650
Fax: 518-465-4625
Email: mparker@ilny.org
Visit Our Website:  www.ilny.org

Like us on Facebook!

Thursday, March 28, 2019

The Stigma of Being Disabled Due to Invisible Illnesses

By Allison Jonergin

Multiple invisible illnesses have combined to disable me. In the order in which I was diagnosed, I have:

Asthma*: a lung disease causing shortness of breath, wheezing, tightening of the chest, and coughing

Endometriosis*: a disease of the reproductive system in which tissues making up the endometrium are found outside of the uterus on other organs, causing pain, infertility, abnormally heavy or painful periods, and digestive distress

Irritable Bowel Syndrome (IBS)*: a colon disorder characterized by abdominal pain, constipation, diarrhea, and food intolerances

Gastroesophageal reflux disease (GERD): a recurring malfunctioning of the lower esophageal sphincter, causing heartburn and the backward flow of the stomach’s contents into the esophagus

Temporomandibular Joint Dysfunction (TMJ)*: a disorder wherein the temporomandibular joint doesn’t move properly, causing pain and jaw locking

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)*: a disease characterized by debilitating fatigue not relieved by rest; other symptoms include sleep disruptions, cognition problems, pain, and the worsening of symptoms following mental/physical activity

Chronic Migraines*: severe headaches on more than 15 days each month, often accompanied by nausea and sensitivity to light and sound

Fibromyalgia*: a disorder featuring muscle tenderness and pain, malaise, fatigue, mood changes, and digestive and cognitive symptoms

Generalized Anxiety Disorder*: an anxiety disorder characterized by excessive worrying or fear, fast heartbeat, tiredness, irritability and problems with sleep

Hypothyroidism: a condition in which the body doesn’t produce enough thyroid hormone, causing fatigue, muscle weakness, and cold intolerance

Degenerative Disc Disease*: pain and muscle spasms caused by osteoarthritis of the spine

Depression*: a mood disorder presenting with chronic sadness, suicidal ideation, fatigue, and changes in sleeping and eating habits

You can see none of these. I’m not bound to a wheelchair or using the assistance of a guide dog. I don’t wheel an oxygen tank behind me.

There are no cures for any of these illnesses.

Still, some ask, “Surely you don’t consider yourself disabled?”

Guest blogging logo showing a stick figure writing with a giant penI didn’t wake up one day and decide to identify as a disabled person. I spent a long time in denial before I accepted the truth.

Others ask, “You’re not just going to sit around collecting disability, right?”

In our capitalist society, it’s taboo to stay at home, unemployed.

“What do you even do all day?” the less blunt inquire.

I’m not able to enjoy what others perceive to be one long vacation.

I don’t question how productive you are on your days off. I hope you’re able to spend time doing things that give you life and lighten the weight of your worries.

It is hard work, physically, mentally and emotionally to live a disabled life due to invisible illnesses. I spend most of my day babysitting my illnesses, like a pack of children after a birthday party. One is getting sick in the bathroom. One has been up all night. Another won’t stop crying, giving me a headache. Yet another whines of fatigue, wanting to sleep in all day. One can’t eat this food or that. The one next to him says she’ll flip out if I don’t serve her this food and that other one too. Another is pinching me all over.

There’s no coffee, no time-out, no day off. There’s no killing any of the kids. I must care for each of them tenderly, loving them back to their sweet selves, if only for a moment. I’m exhausted before the day is half over, feeling overcome by what feels like the flu.

A bad morning doesn’t have to ruin my day, though. Once I give myself permission to start over with different expectations, the day is mine again to conquer.

*May cause additional symptoms

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.

More Blogs by Allison Jonergin:

Friday, March 22, 2019

Weekly Disability Reading List

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

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 added every day.

Even in Grief, I Still Have Pride
Robyn Powell, New York Times - March 21, 2019

A lot of people still find it hard to understand how the difficulties, hardships, and stigma of disability are mixed with pride and solidarity in actual disabled people. This article goes a long way towards explaining.

Why We Turned Down Dr. Phil
Squirmy & Grubbs - March 14, 2019

It’s very tempting to accept whenever public visibility is offered to disabled people. But it matters every single time how we are portrayed, and the messages our presence are meant to convey. Some “opportunities” aren’t worth it.

First Data On Wheelchair Damage By Airlines Released By DOT
John Morris, Wheelchair Travel - March 14, 2019

The numbers may or may not look staggering on paper, but each “mishandled” wheelchair represents massive inconvenience, physical risk, and huge expense. Hopefully, having records of airline performance will help them improve.

Friday, March 15, 2019

Act Today To Save CDPA!

Action Alert in bold white letters on a dark red background

The following Action Alert comes from the New York Association on Independent Living:

We all know by now that The Governor’s proposed budget makes drastic changes to the Consumer Directed Personal Assistance (CDPA) program that will put the whole program at risk! Thankfully, the legislature heard you, and they both rejected the Governor’s proposal in their one-house budget responses. This is huge, as it brings us closer to keeping the Governor’s incredibly harmful proposal out of the final budget!

The Budget Conference Health Subcommittee is now meeting. They will be making tough decisions over the next week or two about what they can afford to support. Anything can happen over the next week or two, so it is essential that the members of this committee hear from you!

Action:

Contact the members of the Senate and Assembly Health Subcommittee! Thank them for their support in their budget response, and urge them to stay strong throughout final budget negotiations in their support to save CDPA!

Assembly Health Subcommittee:

* Assembly Member Gottfried 518-455-4941 or email GottfriedR@nyassembly.gov
* Assembly Member Cahill 518-455-4436 or cahillk@nyassembly.gov
* Assembly Member Bronson 518-455-4527 or bronsonh@nyassembly.gov
* Assembly Member Davila 518-455-5537 or DavilaM@nyassembly.gov
* Assembly Member Fernandez 518-455-5844 or fernandezn@nyassembly.gov
* Assembly Member Barnwell 518-455-4755 or BarnwellB@nyassembly.gov
* Assembly Member Raia 518-455-5952 or raiaa@nyassembly.gov
* Assembly Member Byrne 518-455-5783 or byrnek@nyassembly.gov

Senate Health Subcommittee

* Senator Rivera 518-455-3395 or grivera@nysenate.gov
* Senator Salazar 518-455-2177 or salazar@nysenate.gov
* Senator Carlucci 518-455-2991 or carlucci@nysenate.gov
* Senator Montgomery 518-455-3451 or montgome@nysenate.gov
* Senator Thomas 518-455-3260 or thomas@nysenate.gov
* Senator Gallivan 518-455-3471 or gallivan@nysenate.gov
* Senator Jacobs 518-455-3240 or jacobs@nysenate.gov

You can also contact our North Country Legislators and ask them to support the Senate and Assembly provisions on Consumer Directed Personal Assistance, (CDPA)

* Assembly Member Billy Jones 518-562-1986 or jones@nyassembly.gov
* Senator Betty Little 518 561-2430 or little@nysenate.gov

Weekly Disability Reading List

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

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 added every day.

The College Admissions Scandal Could Have Lasting Impacts for Disabled People
Brittney McNamara, Teen Vogue - March 13, 2019

Anger over this “college testing scandal” could make life even harder for people with disabilities who need testing accommodations.

Flying Tips for Wheelchair Users, By Wheelchair Users
Barbara Twardowski and Jim Twardowski, New York Times - March 8, 2019

A good list of air travel tips for travelers who use wheelchairs. In the meantime, airlines are now required to keep records of wheelchair damages and other problems, so soon we may finally see the full scale of the problem.

On Disability and on Facebook? Uncle Sam Wants to Watch What You Post
Robert Pear, New York Times - March 10, 2019

Nobody wants people to cheat on Disability, but trying to figure that out by looking at someone’s Facebook page seems intrusive and potentially grossly misleading.

Friday, March 8, 2019

Weekly Disability Reading List

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

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 added every day.

Mike Oliver, pioneer of ‘revolutionary’ social model of disability, dies - reports
Aine Kelly-Costello, NewsHub - March 3, 2019

This profile also provides a good explanation of what the “Social Model” of disability is and why it’s so important to people with disabilities, the disability rights movement, and Independent Living Centers like NCCI.

My Knowledge of My Body is Often Ignored When I Seek Medical Care
Rachel Lichman, Rooted In Rights - February 28, 2019

It’s not exactly news that disabled people tend to have a harder time dealing with the medical profession. This personal essay explores some of the ways that actually plays out.

Disabled Docs – Healing the Medical Model?
Tim Gilmer, New Mobility - March 1, 2019

Part of a series on medical professionals with disabilities … not only expanding opportunities for disabled people in the field, but hopefully also helping making the profession more responsive to disabled patients.

Friday, March 1, 2019

Weekly Disability Reading List

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

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 added every day.

Carrie Ann Lucas Was a BAMF
Rebecca Cokley, Disability Visibility Project - February 27, 2019

This past weekend the disability community lost a tremendous advocate, who championed the rights of parents with disabilities.

Personal assistance needed
Annemarie Schuetz and Elizabeth Lepro, The River Reporter - February 20, 2019

An excellent profile of a CDAP user, how the program works, and how it is under threat.

Will Presidential Candidates Remember the Voting Power of People With Disabilities?
Robyn Powell, Rewire.News - February 20, 2019

The 2020 campaign is already starting!

Thursday, February 28, 2019

A Day in the Life

By Allison Jonergin

I awaken with a jerk. Cramps. I leap out of bed, and before I know what’s happening, I’m in the bathroom where my intestines reject yesterday’s meal-of-the-day.

Out of breath and soaked in perspiration, I hobble back to bed. Sunlight streaks through the blinds, prompting twinges of pain behind my eyes. I want to close them, but my anxiety is already awake, and my heart is pounding loudly in my chest. I toss and turn for a while, until I’ve recovered enough from my morning escapade to rise and shower. I forget to bring a towel with me, thanks to fibro fog clearing my train of thought from its tracks, and head back to the hallway closet twice before remembering to grab one. The bristles of my toothbrush scrape against my teeth like nails against a chalkboard. Already my throat is dry and hoarse – a side effect of more than one of my medications. The dry mouth rinse feels luxurious and refreshing, and I swirl it around and around in my mouth, not wanting to expectorate.

I slip off my clothes and steady myself as I step into the tub, using two shower bars for support. I get dizzy spinning around in an enclosed space, and knock a tube of exfoliator onto the floor with an echoing boom. I cringe. At first, I’m tempted to leave it, knowing there’s a good chance I’ll knock it over again. My better sense kicks in, and I realize I have an equal or better chance of tripping over it. I squat and pick it up. The warm water turns cold for a moment, and I feel as though I’m in the blast of a firefighter’s hose. My pain receptors memorize the location of each droplet to haunt me with later, long after I’ve turned off the water.

Guest Blogging with picture of a while 3 dimensional stick figure moving a giant pen
I dress in warm layers of soft clothing, ditching abrasive materials like denim. Allodynia – a pain caused by non-painful stimuli – makes it hurt when fabric rubs against my skin. Moreover, allodynia can make the surface of my head and body sensitive to touches of any kind, even a loved one’s soft embrace. A well-intentioned hug can squeeze me like a garbage truck.

I no longer risk going an entire day with cold feet. I’ll pack extra socks in my purse and slide on a second layer if I’m having trouble regulating my body temperature or the outside temperatures dip so low that the cold takes root in my bones and doesn’t leave.

With fibromyalgia, the trick is getting ahead of the pain using preventative tactics. Eating a diet rich in whole fruits and vegetables fends off inflammatory pain caused by eating foods high in wheat and dairy. Allowing ample time in my schedule to rest during the day relieves the stress of a sleepless night. I’ve crafted an exercise routine that heals and empowers my body when I practice it consistently.

Along with an extra pair of socks, in my purse you’ll find dry mouth lozenges and lip balm. Where dry mouth is, chapped lips aren’t far behind. I carry with me a bottle of water at all times to satisfy my mouth’s craving for coolness. I seek out these small sources of comfort with purpose, planning them into my day.

I hop from one sweet indulgence to the next, relishing in the relief that washes over me, cleansing my despondency until the next guilty pleasure.

Next up, a nap. 

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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