Posted on January 20, 2019 in activism, caregiving, disabilities, life, opinion, politics, strength

People with Disabilities Fight Walls Every Day.

San Mateo County is wealthy, beautiful, and filled with opportunities. I believed that bringing Rhia to this prosperous city close to Stanford Medical Center (where she gets her medical care) would be wonderful. Rhia agreed. No more three-hour drives. No more being bored in a tiny town. No more hot summers. We packed our stuff and moved to a new home, filled with hope and excitement.

That was four months ago. We’re still waiting for the opportunities.

The first barrier to greater opportunity for Rhia came from Social Security. Despite the fact we pay three times the rent we did in Ukiah, Rhia’s disability check was reduced by $200.00. Why? Because the Federal Government counts any rent below market rate as income. Therefore, Rhia is getting support in the amount of $300.00. Never mind the fact that the market rate is over $1000 for a bedroom and Rhia only receives $900 to live on. It doesn’t matter that what she receives doesn’t come close to what she needs to survive. The Feds wouldn’t count reduced rent against her if she lived in subsidized housing. Oh, there’s a 5-year waiting list for subsidized housing? Well, it’s a good thing Rhia has somewhere to live! She could always be homeless and get the full amount needed to survive. It’s up to her.

Thanks a lot Feds. (insert middle finger here).

And then the Federal Government screwed Rhia again; there was a paperwork problem transferring her MediCare from one county to the new county. The process was already slowed down due to the holidays, and then to make it more fun the so-called President shut the government down. There is no one to answer the phone or anyone to figure out which black hole Rhia’s paperwork is trapped in. So we wait. She needs MediCare coverage to go to the doctor and she has to go to the doctor for a physical exam before she can start a day-program. But who cares? The President and Congress are bickering over a stupid wall! Too bad Rhia, you get to wait.

Day programs… there are some incredible programs for people with developmental disabilities. But getting into a day program isn’t easy. Waiting lists are months, even years long. I found a great program that is the perfect balance of center-based and employment. They provide art and vocational support and there are two other deaf people in the program. The director I spoke to thought maybe February, but now it looks like they won’t have an opening until Summer. Then a newer program opened and they’re happy to hold a spot for Rhia. Unfortunately, they are completely community-based, meaning there isn’t a center where Rhia can rest when she needs to. Plus, no one knows Sign Language. But the people are kind and Rhia is so bored and lonely we’re willing to give it a try.

Oh, wait, Rhia’s MediCare hasn’t transferred yet. Sorry kid, you have to wait until the Feds get their act together and reopen the government. Hope you like sitting around the house coloring all day. And it’s a good thing your mom is in Grad School so she can get a student loan to pay for childcare out of pocket.

I am broke, Rhia is lonely, and the government shutdown drags on. I’ve done everything I can, called every number, talked to every human I could reach, and have hit a massive bureaucratic brick wall.

A wall has been built, just not the one Trump wanted.

This is why people with disabilities tend to stay where they are, regardless of whether or not the services in their area are decent, or even accessible. This is why there are so many disabled people living on the street, or in sub-standard housing. Rhia has me to fight for her, but how many people have you seen who don’t have anyone? How many times can you be defeated before you just give up?

I will never give up on my daughter, but we sure could use a break.

Posted on January 20, 2018January 20, 2018 in activism, life, opinion, politics

Why I marched in Washington DC

One year ago today, I travelled across the country to Washington DC to join the Women’s March. There were marches all over the US, including several two hours from my home in Northern California. Why did I travel thousands of miles in the winter to the East Coast?

“President Trump” horrified me. His obvious hatred of women should have barred him from winning the presidency, but instead it seemed to propel him to the highest office in my country. His racist and misogynist views should have ended his popularity; instead, his popularity grew. He won.

I looked at my 20 year old daughter and knew I had act.

Here is the link to my blog post describing the March on Washington

And here is my original post on why I marched

This year I am staying in my home town and bringing my daughter to our march downtown. There will be hundreds of us, not millions, but we’re a small town. I want to support my own community and show my daughter what we’re marching for. She is developmentally delayed and doesn’t understand the larger issues of racism, misogyny, and classism. She doesn’t know who the president is (maybe she’s lucky in that!). But she understands kindness and respect. She knows how it feels to be teased and bullied. She values friendship and being polite. I want to show her that most people are kind. And I want to show her that she has a voice; she can say no. She can demand that the President and our Elected Officials are respectful of her and everyone else.

Posted on November 11, 2017November 11, 2017 in opinion, politics

Why do we ignore Veterans?

Today is Veteran’s Day in the United States, the one day of the year we honor those who served in the military. On the other days of the year, we forget them. We step over homeless vets as they sleep on the street. We complain about the budget deficit while our country fights a war in Afghanistan. We underfund the VA. We ignore the thousands of families living on military bases while their loved ones fight far away from home. We’re all patriotic when we see a young person in a military uniform but as soon as they’re out of sight we forget them.

Thank a Veteran for fighting for you. Thank a Veteran’s family for letting them go. Thank a Veteran for the years they dedicated and the hours they spent facing death. Do it today, but do it tomorrow, too. These men and women sacrificed for you and their beliefs. Sometimes they joined the military because they didn’t have any other choice; these are kids from rural areas with no money for college or a job waiting for them after high school. Some of them were drafted. Some fought because it was the right thing to do. Some fought even when they knew there was no good reason to.

They deserve our respect, not pity. They deserve to be remembered and honored every day, not just once a year with a flag wave. Thank a Veteran for their service, and then call your Congressperson and let them know you stand with Veterans. Demand fair treatment. That’s the best way we can say thank you.

Veterans-Day-2016 — Image from Business Wire http://www.businesswire.com/news/home/20161110006634/en/Ryder-Marks-Veterans-Day-4500-Military-Veteran

Posted on July 16, 2017July 30, 2017 in activism, disabilities, mitochondrial disease, opinion, politics

Lobbying for Healthcare in a bizarre world called Congress.

My plane landed in Washington DC at 5:30 AM. I’d never taken a “red eye” before and I was surprised I’d managed to get a little sleep on the flight from San Francisco. Grabbing my suitcase I found my shuttle and rode the 20 minutes to my hotel. In the lobby, the clerk said cheerfully, “Good morning. Checking in?”

I held up a finger. “Just a minute. Where’s the bathroom?” She pointed down the hall to my left.

Quickly I changed out of my yoga pants and tshirt and put on my professional looking dress, one I had chosen because it didn’t wrinkle. I brushed my teeth, put on earrings, slippped into heels, and added lipstick. After leaving my overstuffed suitcase with the front desk I joined the group of people heading to Congress to fight for health care for people with Mitochondrial Disease. It was 7 AM and I needed coffee bad. But I was ready.

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This was day one of the UMDF conference. I joined my assigned group, a doctor and a mom from California and a man who had LHON. We were to meet with 5 of our political representatives or their staff, in the Senate and the House. At first we weren’t sure what to do, but once we got to Senator Feinstein’s office our group found its voice. The doctor in our group explained about Mitochondrial disease and the research efforts of the National Institute of Health. The mom talked about supplements and the need for insurance companies to provide them. The man with LHON talked about being affected with a disease. And I talked about the day-to-day-caring for my child and how important MediCare was for her life. The staffer took notes and asked numerous questions. We four felt like we’d made an impact.

The next staffer was either new or simply overwhelmed. He took a few notes, but mostly looked like he had no idea what was happening. We were all crammed into the reception room of Kamala Harris’s offices and people came and went and chatted over our heads as we tried to give our presentation. I couldn’t blame the poor guy; it was Thursday and all week people had been yelling about the GOP Healthcare Bill. Everyone was desperate to go home for the 4th of July break and I suspect at 10 am he’d already worked 5 hours.

From the Senate building we walked across the Capital grounds toward The House of Representatives Building We had to take the long way because the Capital building was blocked off by armed military police. Our local escort shrugged it off; road closures and the military on alert was just an ordinary day in Washington DC.

At the Offices of the House of Representatives we gave the same presentation, this time directly to Judy Chu. She was extremely kind and appeared interested in what we had to say. Here was a real pro, someone who could listen to people talking health care during a week the words “health care” made people scream. At the end of our meeting, I thanked her.

“I really appreciate how hard you and other Democrats are fighting for people with disabilities like my daughter.”

She shook my hand and smiled. I wonder if politicians get many thank you’s?

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Then we met with a Republican staffer from New York who was obviously fed up with the words “health care” and gave us 4 minutes of his time. By then our group had split up. I met my Representative, Jared Huffman, on my own. Our meeting time had been changed but I didn’t know, so I sat with a staffer and talked about my daughter. By then it was 3:00 and my brain was so fried I couldn’t remember my part of the presentation, let alone how to explain Mitochondrial disease and the National Institute of Health. I’d walked up and down and around the halls so many times I lost track of which building I was in. But this staffer sat at the table with me, smiled warmly and asked questions. And then Jared Huffman himself stepped out of a meeting for 2 minutes to shake my hand. I wanted to hug him, but instead, I thanked him.

Walking around those buildings, I passed office after office of congresspeople from every state. Climbing the stairs, I detected that the marble steps closest to the hand rail were slightly grooved; thousands of footsteps over hundreds of years had slowly worn down the lip of each step. Every conversation crashed into the next, echoing down the stone halls. There wasn’t a moment of quiet, not even inside the offices where we met people who at least appeared to want to help. Once, I used the wrong elevator, accidentally hopping on the one reserved for elected officials. An older gentlemen in a nice suit smiled but didn’t reprimand me. I wonder which state he represents?

By the end of the day, I was worn out, confused, and ready to finally check into my hotel room for a shower. But I was also exhilarated. Here I was, actually talking to people in Congress about healthcare the same week Congress was debating healthcare. I shook the hands of people fighting for my daughter. I don’t know how they do it, day in and day out.

And I have a better understanding of our democracy, at least the ideal of democracy. A thriving democracy is more than just voting every few years; it requires participation. It needs us to talk and listen and debate and argue. We need to interact with our Senators and Representatives and make sure they hear us. Otherwise the only people they’ll hear are the people with the checkbook.

I love Washington DC. This makes the second time I’ve been there since January and I have a feeling I’ll be back.

Posted on February 25, 2017February 27, 2017 in history, opinion, politics

Bury My Heart at Standing Rock

mordant-standingrock-01 — images from North Country Public Radio

When I heard the news, I cried.

After a year of peaceful protest, millions of supporters, veterans providing protection, celebrities raising awarenes, and Native Tribes from all over the world joining together to fight for clean water, the oil company won. The North Dakota Access Pipeline is being built as I write this and there isn’t a damn thing we can do about it.

youngmanpolice — Image from Democracy Now

Does money always win?

When I saw the police rolling in on miliatary style troop carriers to surround the Oceti Sakowin camp, complete with riot gear and assault rifles, I cried. How many times in our history have Native People faced this exact situation?

nationalguardteepee — Image from Voice of America

All the People wanted was clean water. That’s it. They didn’t want to annex the land back to the reservation or build a casino or anything more than a guarantee that they and their grandchildren would have clean water to drink. Clean water. One of the basic requirements of survival.

And now there’s no guarantee they’ll have clean water next year.

regina-brave — Image from Native News Online

I feel powerless, angry and sad. I sent money to help the Water Protectors buy supplies for winter and then more money to hire lawyers. Thousands of people did the same. But none of us have enough power or wealth to fight oil companies and protect clean water.

Then I saw this: https://twitter.com/the_orangeidiot/status/834590610644402177 This the final message from Raymond Kingfisher, leader of the Cheyenne People and of Oceti Sacowin Camp. With tears in his eyes and a voice filled with emotion, he led the final prayers and thanked everyone for their support. He also promised that the fight wasn’t over.

This powerful video recorded on the last day of the protest shook me. If these people can walk away peacefully and proclaim the battle isn’t over, then so can I. If they can face that stark grief but still have hope, then so can I.

I will fight for people with disabilities, for equality, for compassion, for freedom of the press and of speech. I will fight for healthcare and education. And yes, for clean water.

I will fight for the welfare of future generations, just as the tribes at Standing Rock did.

Here is another powerful report from the last days of Oceti Sacowin Camp from Intercept, by Jihan Hafiz: https://theintercept.com/2017/02/25/video-a-closing-prayer-for-standing-rocks-oceti-sakowin/

And here is how you can help the battle:https://medium.com/@ShaunKing/please-support-these-5-standing-rock-legal-defense-funds-to-stop-the-dakota-access-pipeline-754be4674ec2#.b6nzwtxnh (thank you Shaun King for putting this list together)

Posted on January 24, 2017 in disabilities, events, history, politics, special needs

How it felt to be at The Women’s March on Washington

I’ve been trying to write something profound about how it felt to be at the Women’s March on Washington on January 21st but the best I can come up with is…

Wow….

Seriously, if the word “wow” means mind blowing and life altering.

I met my friend Jennifer, another mom of a daughter with a serious medical condition, in New Jersey. She and I then travelled by charter bus sponsored by the Unitarian Church to Washington DC. The first time I said “wow” was at a rest stop in Delaware. There were hundreds of busses packed with thousands of excited women. We were all going to Washington DC that cold, foggy morning. The weather wouldn’t keep us home.

In Washington, the bus crept into the stadium parking lot. After parking, we joined the long line of women, men and some children in pink pussy hats, carrying signs and talking excitedly. The security person shouted that the Metro was overwhelmed, but if we wanted to catch a ride, turn left and wait about an hour. “Or walk two miles that way.” Jennifer and I chose to walk. Thousands of us walked, filling the sidewalks and roads with cheerful protest songs. The march had begun and we weren’t at the event yet.

When we reached the Capitol building we stood on the steps and looked across the Capitol Mall, stunned by the hundreds of thousands of people we saw. It was a milling sea of pink capped people. Slowly we walked into the crowd, unsure of what we’d find. There were so many angry, frustrated, mobilized people, but instead of rioting or breaking windows, people were holding signs, singing songs, and talking to each other. A woman stood on the edge of the reflection pool, holding up a sign and described her sign as if she was Donald Trump. “My sign is soo huuuuuge.” “This the greatest sign of all time. I promise. It’s great.” “This sign will make America great again.” Everyone laughed and cheered.

We We pushed on, trying to reach the main stage where the speakers were, determined to catch a glimpse of Angela Davis. As we got closer to 3rd and Independence, people stopped moving and we were surrounded, shoulder to shoulder, pressed forward and then back by the waves of the crowd. No more room at the stage area. The larger than expected crowd of women had maxed designated space and spilled out into the surrounding roads.

Managing to turn around, we struggled like eels fighting up stream and made it to the line for the porta-potties. Might as well stand in line for 30 minutes; by the time it’s our turn to pee we’ll need to go. People chatted and laughed at signs or discussed politics. Occasionally a cheer would rise from the stage area and then spread outward to our line, passing by in a wave of sound. A famous person would walk through a cordoned off security passage. We caught a glimpse of Drew Kerry’s neck. More cheers passed through and onward and we wondered who was speaking.

After using the porta-potties, Jennifer and I decided to try and work around the edge of the crowd to where the march was to officially start. Only problem: there was no edge to the crowd! We thought we found it but instead of widening, the pathway narrowed and we were squeezed with a thousand others onto a sidewalk between cement barriers. The crowd stopped. No where to go. We had to wait for the crowd to move as one before we could escape. But rather than feeling anxious, I was calm. The crowd stayed calm. People were impatient, but not enough people became agitated to cause any problems. One woman and her friends forced their way through the crowd with a force so strong she spun me, which then spun Jennifer and then the woman behind us, as if we were all attached to cogs! Instead of getting mad, we three laughed. I glanced to the other side and realized I was pressed against a movie star. She and I chatted, but I didn’t break her cover. On this day, we were all just women.

At last the crowd was allowed to move and the march began! Jennifer and I unfolded our banner, a pink blanket with “Respect Young Women with Disabilities” embossed on it, as well as the names of young women we were representing. My daughter’s name was next to Jennifer’s daughter’s name, and next to those names were the names of daughters of friends. So many young women who are under threat by the Trump presidency. We walked in the street and chanted with others. We stood beside a teacher in front of the Department of Education Building and held up a sign that said, “Protect Our Schools.” Three teachers fighting for education. I’m sure there were thousands of teachers there that day.

The march lasted two blocks. As the marchers rounded a corner we crashed into another crowd of people being pushed back from the stage area. Jennifer and I realized we had to get back to the other side of the crowd so we could catch our shuttle bus on time, but how? We dove in and wiggled up stream again, but were tossed back over and over by the force of people. Finally we found a way through by squeezing behind food trucks and stepping over boxes. It took 45 minutes to travel one block. We were exhausted and still had to walk two miles to the bus parking lot.

Sitting on a curb to rest, we watched four young women take turns snapping pictures of each other. Jennifer got up and asked if they wanted a group photo. The women smiled and said thank you, then posed with their signs pronouncing, “Black Lives Matter.” I wasn’t tired any more. Their excitement and energy filled me with joy. These young women were probably in their early twenties and were thrilled to be a part of history. They believed down to their bones change could happen. My 50 year old jaded self wanted to cry, because in that moment, I knew how they felt.

We rested again in Lincoln park after walking a mile and watched thousands of protestors walk by, heading back to their shuttle bus just as we were. Everyone was so happy. Tired, but inspired! The police were still smiling at the end of a long day and I realized they had been kind and respectful all day. I never felt threatened. The locals watched us walk by their homes and waved and cheered, as thrilled by our protest as we were.

On the bus, everyone slept, worn out from such an epic day. I now know what that word means too. Epic. A part of history. Something that has changed me. Reframed my way of looking at the world. And all I can say is…

Wow.

Posted on January 18, 2017January 18, 2017 in disabilities, politics

Why I March

womens-march

I am packing for my trip to Washington DC. I have warm clothes, a good coat, comfortable boots, and a sign that says “Respect Young Women with Disabilities.” I’m meeting another mom of a special needs child and together we will join The Women’s March on Washington on January 21st.

Why am I marching?

Because our daughters, and thousands of other children and adults with disabilities, need health care.

Because all daughters deserve respect, especially from our elected officials, and no one has the right to grab or molest them.

Because Betsy DeVos, the nominee for Education Secretary, doesn’t know what IDEA is or why it is important.

Because Jeff Sessions is a known racist but will be the Attorney General.

Because we are all immigrants and the children of immigrants. Immigrants and slaves built this country and immigrants sustain it. The only people who aren’t immigrants are Native Americans.

Because religious intolerance is anti-American.

Because people I love are Gay, Lesbian and Transgender.

Because climate change is real and if something isn’t done to stop the damage to our planet our grandchildren will suffer.

Because I am a rape survivor.

Because Mr. Trump has repeatedly shown his disdain of women and people with disabilities.

I walk for those who can’t, or who are unable to travel to Washington DC. It is my duty as a patriot to stand against injustice and fight for those unable to fight for themselves.

I am marching against hate.

Posted on January 16, 2017January 16, 2017 in life, opinion, politics

How to be Kind.

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(image from http://madison.citymomsblog.com/kindness/)

Someone said, “You’re a better person than I am,” when I told him about my 100 days of kindness challenge. He said he couldn’t imagine just ignoring all the hatred going around. But that’s not what the challenge is about. Staying silent when you see injustice is not being kind. Speak up. Speak out. Protest. Fight. But do it in a way that shows your strength and integrity.The challenge is to not feed the anger and hatred.

How?

No name calling. If someone says something you disagree with, or you find offensive, tell them. But don’t stoop to calling them stupid or idiot or something worse. If they say something bad about you, tell them to stop. If they don’t, ignore them. People who have no better argument than calling you a “libtard” aren’t worth your energy.

Practice empathy. Take two minutes while you’re waiting in line to imagine what it must feel like to be the girl bagging up your groceries. Or how hard it must be for the person using a wheel chair to get all her shopping done. Instead of zoning out on your phone, look at the people around you. Everyone is struggling, not just you.

Hold the door for someone who’s hands are full.

Give up your seat on the bus if someone needs it.

Buy a cup of coffee for a homeless person on a cold morning.

When someone cuts you off in traffic or shoves past you in line, take a deep breath and count to ten before reacting. Take that pause to deescalate the anger and keep a clear head. Then decide how to react. Will you let it go, or confront the person? Either way you’ll be in better control of yourself.

Being kind is simple. Just remember all the lessons we were taught in elementary school about respect and bullying and follow them as an adult. It’s no mystery. Stand up for what is right. Refuse to spread hate. Be polite. Be considerate. But take no shit.

Posted on November 12, 2016 in disabilities, life, politics, special needs

Dear Trump supporters, I understand why you voted for him, but can you understand why I’m angry?

Dear Trump supporters,

I understand why you voted for Trump. I live in a rural area and work in one of the poorest counties in California, a county with no jobs, substandard housing and dirt roads. This is the kind of place Obama’s promises never reached. The people here are angry, and wanted to send a clear, loud message to Washington DC.

I understand, but can you try to understand why I’m angry?

My daughter has severe disabilities and is one of those people Trump mocked while campaigning. She is a woman who depends on government services for her survival. She lives with me and I depend on services to take care of her. Without the support of Social Security, MediCare and In Home Support Services, I would be forced to put my child in an institution. I thank my government every day for the help my family receives. Trump wants to take that help away.

My husband is a cancer survivor. “Obamacare” saved him and our family. Without subsidized health care and the changes in health care law, he probably would have died and I know our family would be bankrupt. So again, thank you government. I know it is not a perfect plan, but it saved my family. Trump wants to take that away too.

I am a rape survivor. Many women have accused Trump of sexual assault and rape. He brags about it, and now, a sexual predator will be president. What message does that send to women in our country? Our voices and our bodies don’t matter. Men can abuse us and we are powerless to stop it.

Trump is racist. He openly hates Mexicans and Muslims. He thinks black people should shut up about racist cops. And his win of the presidency sends a message to other racists that it’s okay to write swastikas on walls and beat up immigrants.

Many of the people I love are gay, lesbian and transgender. Will they now be denied legal protection to work and live peacefully? Will families be destroyed?

Again, I understand why you voted for Trump, and I know a lot of you aren’t racist or misogynist. But in voting for him, you told people who are racist and misogynist that it’s okay.

You can be the biggest bigot in town and people will still respect you. Hell, they might even elect you president.

Terena Scott

writer, caregiver, teacher, playwright, former publisher and unapologetic book hoarder

Category: politics