I Lost My Cats

 I say this like I might say I’ve lost my marbles. Certainly anyone  who has a cat knows they can drive you crazy. Maybe it’s because they  swat your marbles only god knows

 where.

I lost my cats. I looked  by the windows, cat perch, cat condo, on my bed and every soft spot I could find. No cats.

I shrugged and got busy writing. A few hours later, I searched again. Nary a cat to be found.

Enough of this. I went to the kitchen and got out the cat treats. Two cats appeared out of thin air.

They drive us crazy, but we love them anyway.

Cat Ladies for Kamala!

Angie C. Orlando

September 2, 2014

Permission is granted to share

Charlie and the Chocolate Factory

 

I just finished reading Wonka. So let’s talk about it.. Wonka, the book, is a cute story set when Willy Wonka was a young man trying to set himself up as a world class chocolate maker.

Nothing, and I mean nothing, is better than the original book by Roald Dahl. Charlie and the Chocolate Factory is one of those precious, timeless stories that all children should read, and adult should re-read Keep the magic flowing, just like the chocolate river.

But what about the movies? Which is your favorite movie?

I grew up with Willy Wonka and the Chocolate Factory. The movie was release in 1971, two years before I was born. It was lovable and weird and Gene Wilder was weirder. The Oompa Loompa were creepy and the special effects were lame. No matter. I will always love it to death.

Yes, the special effects are dorky. They were limited with what they could do, since it was the early 70’s. We got Geese instead of squirrels. Did I mention the Oompa Loompa were creepy? Yikes.

I never got to see Charlie and the Chocolate Factory with Johnny Depp, or the new Wonka movie. I’ve heard a lot about both movies. Bad nuts beat bad eggs. 

I have a lot more to say on this subject.  More to say on this subject. Stay tuned.

At the ER

 Recently I went to the  hospital in Salem. The first trip was to urgent care for sharp pains in my right side. They said I had rib cage inflammation and gave me steroids. The second trip was  to urgent  care for pressure-like pains in my left side. They said I had a UTI and gave me antibiotics.

I can’t go to my doctor’s office when I have an urgent problem or illness. They need two weeks notice to schedule a sign language interpreter. My friend had to help with communication at urgent care. She can fingerspell. It’s not ideal. It’s against my rights under ADA. But it’s the only thing I could do.

The pain in my left side got worse. It hurt so bad all I could do was sit doubled over. I also had a reaction to the antibiotic. This time I went to the ER. To do this, I needed an actual interpreter.

My friend called the only interpreting agency in the area to give them notice that I would need an emergency interpreter. I can’t ask for an interpreter myself, or else I would have to pay for the services. The hospital has to call the agency.

The fight began. I was  in my wheelchair, moaning and crying from the pain. I could not understand what they were saying, but I could hear the yelling. It made me feel ancious, small and worthless.

“We have a system here,” the woman said. 

By that she meant VRI (Video Remote Interpreter). This is when the interpreter is not on site. Technology is used and the interpreter appears on a computer screen. Sorry, I’m DeafBlind. The blind part means I can’t see.

I always have this urge to say, “Let’s do it.” Then I’ll feel the screen and act puzzled when I can’t understand the interpreter.

“We have lots of deaf and blind people who use the system.”

Not true. I’m the only DeafBlind person in Salem and probably the only one in my small county.

The argument continues. Charlie insists they must get an interpreter from the agency.

“I’m going to call my supervisor.”

The first supervisor comes in. The second arrives. The third shows up. All of them refuse my request.

“You did it here twice recently,” they say to Charlie. “You have to do it now.”

It takes four years of colle to get a degree in ASL or interpreting, and the person must  pass various skill tests. A family membe is not an interpreter. A friend  is not an interpeter.

“Why are you changing your mind all of a sudden.”

Because this is an emergency, and I need to know what is being said in my own language. I need to be fully informed.

Charlie spells into my hand, and I don’t understand.

Because I need to understand everything. What if that had been vital information, and I didn’t understand?

They did something really strange. Someone called Columbiana County Board of Developmental Disabilities, and my SSA was sent over. Why? WHY? She’s a wonderful and caring person, but she doesnot know sign language. I need an interpreter to communicate with her. How was she supposed to help?

Several hours have passed and I’m still in the waiting room. They finally agree to call the agency.

“It won’t take long,” Charlie tells me. “They have an interpreter ready for you.”

We wait and wait and wait. No interpreter arrives. A few more hours pass. The agency calls and says they have no available interpreters.

What use is an emergency interpreter line if there is never an interpreter?

What am I going to do now? What choice do I have?” Charlie has to be my interpreter again.

I go into the room, put on a gown and wait. A nurse finally arrives to put in and IV. I tell him not to do it in my hand. It  interferes with communication. I’m dehydrate, and he can’t find a vein. He puts it in my hand.

My left arm is out of order.  I can’t use it with the IV, pulse ox and BP cuff in the way. Do they  realize I need use of the arm to communicate?

The doctor finally arrives. It’s the first thing she says. It always is.

“So, you are deaf and blind?)

Angie C. Orlando

September 1, 2024

Permission is granted to share

How You View Me

 I identify as a human, woman, American, writer, voracious reader, Dr. Pepper addict, cat lover... who happens to be DeafBlind.

My disability does not define who I am. It is significant in the way it limits me, but it's not a  major component in how I view myself.

How do you view me?

Most people say I am amazing, inspiring and encouraging.

I hate those words. They have no meaning to me. I've heard them so many times they lost all value as a compliment.

If you can't say something nice, don't say anything.

If you can't find other words to use, don't say anything.

After 20 years of fake praise, I don't know how to determine if praise is real. I assume that it is not.

I've done things that I am proud of. I won custody of my child. I earned an MFA in creative writing. I published a book. I'm the star of a documentary film.

Even with those accomplishments, only a few people can praise me and have it hit the mark.

Let's talk about the film. The title is: I'm So Amazing. I was not a happy girl when I learned about the title.

Hold on, there. The title is based on a sarcastic, snarky poem I wrote. The purpose of the poem is to get people to understand that I'm not amazing at all.

The film explores themes like inspirational pornography, lack of service and the need for accessibility. Many people are in this film to help tell this story. It isn't all about me. I think the final result is brilliant.

We had a sneak peak in August and the premiere in September. Both were held at Kent State University.

The reviews and comments were positive. It seemed like the film achieved the goals of changing perspective and educating people about disabilities. Even Joseph learned something new.

When talking to people after the movie, they said that I was amazing, inspiring and encouraging. I wanted to cry. Did they get anything out of viewing the film. Did they understand?

FYI, the movie will be shown at the Cleveland Clinic on April 12th, 2023. It is open to the public. Admission is free, but online registration is required. 

The film is not available  online or for personal use.

So, yes, I published a book and I'm in a film. Your prise makes me feel like a fraud.

I'm not special. I've had a few moments of triumph, but in reality, I haven't done much of anything.

Over the past five years, I've been struggling with depression and PTSD. Lack of motivation has been devastating. Why do you think I stopped blogging? Every thought I wanted to write, I couldn't do it.

I spend most of my day sitting in my recliner, reading, thinking, reading and napping. I hurt. I'm drowning in physical and mental pain. And you thinking I'm inspiring?

Angie C. Orlando

March 2023

Permission is granted to share.

Blow My Mind

 What would blow my mind?

If all wars ended and never started again.

If people stopped hating each other.

If people stopped killing each other.

If all guns disappeared.

If everyone had equal access to health care.

If people with disabilities had 100% access to everything.

If our planet could be repaired.

If Ohio was a Winter wonderland like it used to be.

If holidays didn't hurt so much.

If I could wrap myself in a rainbow with a cherry on top.

If I could find love without sex.

If anxiety, PTSD, depression and other mental pain ceased to exist.

If COVID and other illness were gone for good.

If my child's pain would end, and he could be the person he wants to be.

If Bast would live forever and never grow old.

If Mom and Tony would return to life.

If the rest of my family learned ASL

If I could learn to love myself.

If I could see again.

If I could hear music.

If I could play the saxophone.

If my right foot would stop hurting.

If I could walk around the block.

If I could go out by myself.

If I could work at a library.

If Dad's back stopped hurting.

If Scott won the Boston marathon.

If I could afford a nice house.

If Meg, Charlie and Makenzie all lived in Kent.

If the film won an award.

If I could publish another book.

If children played outside and use their imagination like they once did.

If sugar didn't cause cavities and weight gain.

If I liked to eat fish, green vegetables and other healthy food.

If I could swim in a pool of Dr. Pepper.

If everyone found the time to read a little each day.

If magic was real but never cruel.

If everyone wrote a list of dreams.

Angie C. Orlando

March 2023

Permission is granted to share.

Tech Talk

 I haven't written a tech update in years. There's been so many devices, I couldn't list them all. Tech is always changing. Devices have come and gone. Some broke or wore out. Others became obsolete, and there have been failures. When it comes to actual computers, and laptops, we are talking about many, many failures. My inability to master the computer has been frustrating.

I have what I often call my braille machine I've been using note takers for the blind since 2005. In all, there have been six different note takers, made by two different companies.

Currently I'm using a Braille Sense Polaris, which is made by HIMS. I hate, hate, hate this machine. It wasn't an upgrade to a better device. It was just a big mistake  that HIMS should be ashamed of. I've been using the Polaris for two years, and I have hated every minute of it.

A year ago, my tech trainer took it away, so I could get a Braille Sense 6. But I Can Connect determined it was merely an upgrade for the sake of upgrading, and they don't allow that. Whoever made that decision has never used the Polaris. So my trainer brought it back, and I still hate it.

Note takers for the blind are a dying type of technology. The current best options are all lousy. That includes the Braille Sense 6 and BrailleNote Touch. People who are blind tend to prefer smart phones and laptops. Even in the old days, I was considered odd because I loved note takers so much.

The Polaris marked my first time having to use a braille keyboards. If you don't know what that is, google "Perkins brailler." The keyboard only has nine keys. You literally type in braille.

That's not a problem for most people who are blind. They learn to write braille as they learn to read it. Just like with sighted people learning to read and write. I'm self taught in braille. I only learned to read. I've had the Polaris for two years, and I still struggle to type in uncontacted braille. It's pathetic.

My mind is very much qwerty. Why don't I use a USB or Bluetooth keyboard? I tried both, but there are issues. There are always issues. For example, the right shift key doesn't work. When I touch type, nothing from the left side of the keyboard is in caps. Plus numbers and symbols don't work. If I tried to use the braille keyboard to type a symbol, the rest of the document would have to be typed in braille. There's no going back and forth.

But Angie, if you can't type in braille, how are you typing this long blog?

The greatest note taker of all time is the BrailleNote Apex, created by Humanware. It was number 4 of the 6 note takers I've used. It's my writing machine. You know how writers are. They have their own special way of writing, and they don't deviate from it. This might be a computer,  an old style type writer or even writing by hand. The Apex is my method. It's a truly ancient machine. I did a trade-in right before they stopped making the device. When this one dies, the world as I know it will be over.

Still, there's not much I can do with the Apex. It won't connect to the internet. I write, using the nifty qwerty keyboard, and save to a USB drive. Then I need help from someone with a laptop to post my blog. It's not the best system.

I used to be able to write using the Apex and then email on the Polaris. Now the Polaris won't connect to the internet. Too many obstacles are getting in the way.

The epic disaster occurred when Gmail and other email providers switched to using  two step authorization to login. None of the note takers can handle it. There was a way around this that involved using an app on a smart phone to login  then.... do something. It was kind of iffy, prone to problems. Now it's no good for me. I can't email on the Apex or the Polaris. Welcome to the 21st century, Boomer.

It's not all bad news. I can use the Polaris as a braille display to read my Iphone SE. I love texting this way. It gives me access to facebook, news Fitbit,  Messenger, Google, Kindle and a lot of other apps. Not all apps are accessible. Some are only partially accessible. But there is so much that can be done using a smart phone.

The downfall for me: lack of training and the stupid braille keyboard. There's always something holding me back.

Lets talk about the computer, and other computer, the third computer and the laptop. The bad news is that I failed them all, and now I need a new laptop if I want to try again. But I figured out what the problem is. I can't get comfortable with the keyboard and braille display. You see, with a note taker you get a built in braille display right under the keyboard. They are the same length. It's super easy to switch from reading and typing.

Not so easy with a computer. You use a stand alone braille display that is not connected to the keyboard and  probably not the same length. Many people set it up side by side. That method didn't work for me. I tried putting the display in front of the keyboard. That didn't work with the laptop because of the touch pad. I found myself having to reach for the keyboard. Excuses, excuses.

No, really. I have muscle pain syndrome in my arms from over use. Chronic pain is not a fun reality. I need to be set up in a perfect position or the pain become intolerable. I was glad to finally realize this.

That brings us up to yesterday's tech session. It was another two hours of my trainer trying to fix the Polaris. The Polaris refused to be fixed. Dang machine!

But I got to play with a new toy, and I really like it. The plans for my tech future have taken an unexpected turn. I never thought I'd give up my precious note takers. If I Can Connect will agree, that's exactly what I will do. I'm still in shock.

The new device is called the Mantis Q40, made by Humanware. It has the look of a note taker, with a braille display built in under a qwerty keyboard. The actual device is very limited. The real purpose of the Mantis is to use as a braille display with a smart phone or even a laptop. I'd be able to qwerty type on my Iphone. That would allow me to get more out of the phone and be comfortable using a laptop.

I am hoping for: the Mantis braille display, a new Iphone and a new laptop.

I will need to do a lot of training to learn how to use all of this technology. And then I'd need more training, never ending training. I'm ready for it. When it happens, you can come to my "I will never use they Polaris again" party. It will be a smash.

Update:

Another attempt to fix the Polaris email failed.

ICC agreed to and has ordered me a new Iphone.

They do not want to get me a new laptop because I don't use the one I have.

They do not think I need the Mantis because I have a Polaris.

The Polaris has a few faulty braille cells and will need to be repaired.   

Angie C. Orlando

March 2023

Permission is granted to share. 

Her Hand

I could only reach her hand.

I sat in my mobility chair. She was sleeping in a hospital bed. With the rail up, I could only reach her left hand.

It was warm in my own hand and pulsed with life. Sometimes it twitched while she slept.

I could feel her veins on the back of the hand. Her fingernails were too long and thick, like talons. Her skin was soft.

The hand was alive, because she was alive. Warm and soft... a sleeping hand.

The doctor and nurses arrived. We signed many papers. When we were ready, the professionals got to work. I held her hand as they removed her from the bypass machine that was keeping her alive.

I could only reach her hand. I clung to it, warm and soft, as I said goodbye.

I clung to the hand as I said goodbye to my mother.

She couldn't be dying. Her hand was warm and alive.

I held her hand as I said goodbye.

I said goodbye to my mother.

In loving memory of Lois Ann Orlando.

November 30, 1945 to September 25, 2022

A Piece of My Heart is in Heaven

Angie C. Orlando

March 2023

Permission to share is granted.

I want to go to the fair

Oh, dear, what could the matter be?

Oh, dear, what could the matter be?

Oh, dear, what could the matter be?

I want to go to the fair.

When COVID-19 shut down the country in March, 2020, I had the
idea of keeping a lock-down journal. After all, I'd never been in
a home lock-down before. The journal didn't last long. Even
before the lock-down, long before it, I was struggling with
depression, PTSD and lack of motivation. That hasn't changed.

COVID was too much for me to deal with, and I didn't want to
write about it. I couldn't find the motivation to write about
anything. I didn't have anything to write about. For people who
are full DeafBlind, social distancing is social isolation. It was
very hard for me, and it went on and on and on.

I was vaccinated on February 5th and March 5th. As we headed into
the Summer months of 2021, there was an end in sight. I felt like
life was returning, and I had chances to be around people. The
Kent Heritage Festival and the Harry Potter festival were both
modified, without venders, so I skipped those. I thought about
attending the Blues fest, but I hear music better indoors, and I
didn't yet feel ready to go into a bar or restaurant. I tried to
attend one event, an LGBTQ nature walk. We couldn't find the
group, so I went on a walk with my two SSP's. It was still fun.

August was the golden month to come, when there would be real
event and many of them. I couldn't wait for August.

Then came the Delta variant. Vaccinated people are getting sick.
The rules have changed, and I don't know what they are or where I
stand on this new playing field. Will I get sick? Probably not.
If I get sick, will it be severe? Probably not. But... but...
but...

Am I at risk? Joseph looked it up. He said, "I know you are only
26, but this says that people over 45 are at risk."

Got to love him. I'm 47.

People with disabilities are at risk. Am I more at risk because I
touch things? Am I more at risk because of my genetic disorder?
No one can say. We don't even know what that genetic disorder is.
(More on that another day.)

The Portage County Randolph fair is next week, and I really want
to go. I want to go so bad it hurts. I'm agonizing over this
decision.

We were going to take Iris, my 3 year old adopted niece. It's
been so long since I've enjoyed things through the eyes of a
child. I want to go to the fair.

I don't want to get sick. I can't risk losing my sense of smell.
I'm already DeafBlind. Smell is too valuable to lose.

I probably won't go to the fair.

I want to go to the fair.

Angie C. Orlando

August 2021

Permission is granted to share.

lockdown part 2

Lockdown Day 3

March 25, 2020

I fall asleep quickly but wake up often. Bast is on my left side,
while Nut is on the right. It's a Bast rule that they can't sleep
on the same side. They are too close. I can't move. I roll over
on top of Bast.

I wake up at 6:00 AM and can't fall back asleep. I get dressed.
When I turn on my CI's, I hear a loud noise. It sounds like
music.

I find Joseph in the kitchen making a peanut butter and jelly
sandwich. This meal is his bedtime snack. He is nocturnal these
days.

I read the news. COVID 19 has reached Kent, with 1 confirmed
case. This was inevitable, but it still scares me.

The News Break app is frustrating. I can only access headlines
and blurbs. I want details but can't get to the articles.

My friends suggest I sign up for text updates at cleveland.com.
The website is terrible. Ads flash on the screen each minute.
Text scrolls under my fingers faster than I can read it. I ask
Joseph to help. He says he can't find any where to sign up.

Nut crawls into my lap, and I pet her for awhile. She is a big
cat. I can't read when she's on me. But it's relaxing to hold her
and feel her purr... and snoring.

I'm worried about grocery shopping. I don't know if anyone can
help. I put together an Amazon order to get some Dr. Pepper,
snacks and other things.

I take a long, wonderful nap. The cats join forces to paw me
awake. Nut sits on my chest, and I pet her. Bast attacks Nut to
get her away. I'm forced to get up and feed them.

I discover the items I ordered from Amazon will take several
weeks to ship. I text another friend, and she is willing to get
me groceries. I cancel a few of the Amazon items because I can't
wait that long. Life is so messed up.


Lockdown Day 4

March 26, 2020

I wake early again. My muscles are screaming in pain. It means I
didn't relax in my sleep. Bad way to start the day.

I do trigger point massage on my neck, shoulders and arms. Then I
slather mint scented ointment everywhere it hurts. medicine will
also help, but I will need to be careful and take breaks from
reading and typing. That pretty much means sitting and doing
nothing.

Welcome to my house. Usually, the first thing you'd notice is my
desk. On the desk is a vintage 1983 Cabbage Patch kid boy with
brown hair and blue eyes. His name is Stewie. Next to him, you
would see my collection of Harry Potter dolls.

Those are still there. But what stands out now are the signs of
life with COVID 19 -- Purell and Lysol wipes.

Three people come to my house. I know it's bad, but I am excited
to be around others. First is a tactile interpreter from Purple
Communications, then a woman who wants to be my new independent
living provider. Last is a contractor who will install grab bars
in my bathroom. I will not have to pay for any of these services.

The provider seems eager to work with me. She does not sign, but
we can communicate using text messages. She is ready to start
once the paper work goes through. I was afraid I'd have to wait
until the medical crisis ended.

I need grab bars after a few scary falls. The last one was bad,
although I was not hurt. The contractor has me show him where I
want the bars. I tell him about my habits and the falls. He
decides to install three bars.

I go back to the living room with the interpreter while he gets
to work. Traditionally, I chat with my terps while waiting. I
think nothing of it and try to engage her in conversation. There
is always a pause before she signs to me. She is polite but
doesn't try to prolong conversation or ask me anything. I realize
she is trying to keep her distance. I don't say anything after
that. It feels weird and sad to sit in silence.

I lay down for a nap, can't fall asleep. I don't know why this
keeps happening. I use the bathroom and get back in bed. I fall
asleep. Joseph wakes me to ask about dinner. Both cats paw at my
body. I don't want to get up.

I sit in the living room reading while Bast is on my lap. A super
loud noise scares both of us. I think it's a gun shot and yell
for Joseph. No, he says, but he doesn't know what caused the
noise.


Lockdown Day 5

March 28, 2020

I wake up and feel a tap, tap, tapping on my back. Bast's touch
feels so much like a human.

There is a thud as Nut jumps on the bed. I reach out to pet her,
but hands grab mine and force them against the bed. Who's there?
Nobody answers.

I realize the hands were small and soft like mine. They were
mine. Not again!

Sometimes when I'm half asleep, one hand will sign into the
other. Once I answered with my voice, and my hand signed back. We
had a long a conversation.

I take a rare morning bath. Rare because I don't do mornings. I
am feeling scummy. But I also want to try out the grab bars. They
are awesome.

I text my dad to ask about the noise. He says some people in the
area lost power. He assumes a transformer blew.

I remember when Joseph was six and came to my bed at dawn. He
heard a loud noise, and Grandma said a transformer blew. He was
trembling as I pulled him into my bed.

The only transformer I ever heard of was the toy kind. I imagine
two giant transformers battling at the corner of Roosevelt and
Gardenview. One shoots lasers and blows up the other. I'm too
sleepy to think this is weird.

I finish The Hunger Games. When I first read the book, I was 75%
certain Peta was being sincere. I didn't want Katniss to get
involved with him. She had to be with Gale, who is seriously
badass.

Now, knowing what will happen, I think Katniss is so blind. It's
obvious she does have feelings for Peta. instead of being
desirable, Gale comes off as cold.

My CoNavigator comes over to shop for me. She wears latex gloves.
She has to text me often when the store doesn't have what I want.
But mostly, it works out. Best of all, they have Dr. Pepper.

I take a long, hard nap. Joseph wakes me up to ask about dinner.
Later he wakes me up again. "Are you dead," he asks.

I say "Maybe."

It's 11:30 PM. Not good.

Later, we sit on the couch to have a chat. I find a wrapper and
smell. "Combos?"

Joseph says, "Use your words. You always smell things instead of
asking me about it."

I reply, "My sniffer actually works, so I use it." I am cracking
up.

Angie C. Orlando

March 2020

Permission is granted to share.

conavigator: what's in a name

What should the term be? Support Service Provider, CoNavigator
or DeafBlind Access Assistant?

I felt electrified when I first saw the term CoNavigator -- like
I was full of good energy and passion. To me, CoNavigator
expresses a team approach. I'm the brain who steers this machine,
and makes the decisions. And I'm the heart that keeps it alive.
The other person is the legs, the eyes, the ears, the driver.
Together we navigate this world. I love it. I know there is
Controversy about the term, but I have adopted it for myself.
That was my personal decision.

Some people have a dislike for the term because they feel it
means the DeafBlind person is the co-navigator and the other is
the pilot. If we are going to use that analogy, then the other
person is the co-navigator and we are the pilot. Otherwise we'd
call them the pilot. But I think of it more as a team approach, a
relationship.

I live in a place that has no SSP program. The term SSP means
nothing outside of the DeafBlind community. When I'm in the
public, I use helper or assistant. I don't like it, but people
understand, and it works.

The last time we talked about changing the term, I was against
it. No matter what we call it, the outside world isn't going to
know the term. What we need is education. Better to stick with
the current term and push awareness of what it means.

But like I said, the term CoNavigator set me on fire. It speaks
to me. It's what I want, and it's what I'm going to use.

Support Service Provider and DeafBlind Access Assistant... What
do they mean? A person who provides support or access. What does
that mean? It's vague, it's unclear. It doesn't hit me the way
CoNavigator does.

Support Service Provider provides support. DeafBlind Access
Assistant provides access. Provide means offers or gives. It's a
one way service. Them helping us. I don't like that.

I'm a writer. Words are power. I say DeafBlind, not deaf-blind.
It's a statement. It's a cultural thing. SSP and DBAA are flat.
CoNavigator is lively and colorful. This doesn't have to make
sense to you. It makes sense to me. And that's why I'm using
CoNavigator.

Angie C. Orlando

March 2020

Permission is granted to share.

lockdown part 1

Lockdown Day 1

March 23, 2020

I wake up at 1:20 PM. Bast is pawing at my chest. She wants fed.
Nut is asleep on my other side. I ruffle her fluffy fur, and she
purrs. I pet Bast. She bites me.

My head aches from over sleeping. My joints and muscles are sore.
Medicine will help that.

I don't know if I'm eating breakfast or lunch. Doesn't matter
what you call it. Same thing every day: Uncrustables PB and jelly
sandiwch and yogurt covered raisins. I drink my last Dr. Pepper.
The world really is coming to an end.

I read news. I read a book. I'm in the middle of five books. They
don't hold my attention. I started re-reading The Hunger Games,
because I know I will enjoy it.

Time passes. I struggle to stay awake. I know I don't need sleep.
My problem is boredom and lack of sensory stimulation. Sleep is
the best escape.

Joseph and I argue over what to order for dinner. I want Wild
Goat or Bob Evans. He wants Chipotle or BW3. We decide on Steak
and Shake, but they no longer have grilled cheese. We order
Subway to get some chips. They leave the food outside in front of
the door. There are no chips.

I'm stunned at the rage I feel over missing chips. I'm tired.
fatigue stings the edges of my eye. I can't remember why I didn't
take a nap.

Later, Joseph come to me and says, "Lockdown is so boring."


Lockdown Day 2 March 24, 2020

I wake up at 4:00 AM to use the bathroom. I can't fall back
asleep. I toss and turn for hours before giving up.

I hope to catch Bast asleep. She's so adorable when she's a
sleeping ball of fur. But she is awake. She pins down my hand and
licks it.

I get dressed in black jeans and a nice shirt. I feel silly
dressing up when no one else will see me. But my assortment of
over-sized comfy shirts are in the dryer.

I eat my sandwich and raisins. I love Uncrustables. The
combination of peanut butter and jelly is perfect, and there's no
icky crust. Best of all, I don't have to make it.

Joseph makes his own PB and jelly. He can do it without making a
massive mess. Occasionally he steals one of my sandwiches. He
doesn't have the patience to let it thaw, so he eats it frozen.

I read a little of The Hunger Games. Katniss and Rue just made an
alliance. I like this part.

I decide to read some TV scripts, too. It's been months since I
finished all 7 seasons of Buffy the Vampire slayer. I love
medical dramas like ER and House, MD. I'm out of them. I pick CSI
instead. I never watched the show.

I do chores.. get the cats fresh water and clean the litter box.
I scoop it into a plastic grocery bag. There's a hole in the bag
and it leaks litter. I hate when that happens.

I jump into bed for a nap and sit on Bast. Ooops!

I try for 3 hours and can't fall asleep. This is absurd. I'm so
tired.

Joseph wants to buy the new Animal Crossing game but has no
money. We begin to negotiate. He runs around doing dishes and
other chores. I eventually agree to buy the game for him. I would
have anyway. It's a good natured game and gives him something new
to focus on.

I remember when he was 8, not 18. We'd sit on the couch together
and he'd tell me what he was doing in the game. "Now I plant
orange trees. Now I get on the bus to go to the city. Now I buy a
balloon."

Now he's 18 and still loves Animal Crossing. I can hear the
jaunty music and sound effects. Now my heart lifts... just a
little.

I need sleep. I will end with the lullaby Katniss sang to dying
Rue.

Deep in the meadow, under the willow

A bed of grass, a soft green pillow

Lay down your head, and close your sleepy eyes

And when again they open, the sun will rise.

Here it's safe, here it's warm

Here the daisies guard you from every harm

Here your dreams are sweet and tomorrow brings them true

Here is the place where I love you.

Deep in the meadow, hidden far away

A cloak of leaves, a moonbeam ray

Forget your woes and let your troubles lay

And when again it's morning, they'll wash away.

Here it's safe, here it's warm

Here the daisies guard you from every harm

Here your dreams are sweet and tomorrow brings them true

Here is the place where I love you.

Angie C. Orlando

March 2020

Permission is granted to share.

deafblind rant

Warning: This blog depicts a disabled person being negative. Read
at your own risk.

I am a fire, my body boiling, ready to explode, but there's no
outlet, so the pressure grows.

My stomach is queasy, my head spins, my hands shake. I want to
throw my braille machine out the window. At $6,000 for an old,
outdated device, I hod back. Where do I send the anger, the hurt,
the betrayal?

This is my life. Again and again, a constant battle. But did you
know...?

I never asked to be born. That had something to do with my
parents. I didn't know about that little thing in my genes, the
mutation that would make me a monster. I didn't ask for this!

I have never said "why me...?" If it wasn't me, It would have
been someone else. I don't want this, and I don't want anyone
else to have it.

It sucks. It's a constant battle, fight, war, it never ends. I
flash a pretty smile, say, "Oh, gee... that's too bad" and keep
on ticking. I'm the Deaf Prom queen, three years in a row. Who am
I to cause trouble?

If you believe that, you don't know me. This is not a nice
message. It is called a rant I throw the emotion into my
fingertips, and maybe I'll stay sane... for another day, until
the next blow.

I did not ask for this!

So you run some kind of agency or office that serves the public.
Maybe you are a doctor at a major medical center. You love and
admire me, you swear up and down. But you are very sorry, you
can't afford to pay for my interpreters. After all, this isn't
actually for an appointment. You don't tell me any of this. You
are careful, and you get away with it. After eight or more years,
I'm no longer part of your presentation. There's nothing I can do
about it.

Maybe you are a local doctor. You feel my need for interpreters
is an undue burden. You say you are exempt from that, or you just
don't do it. People work on my behalf for three or four months,
before you get the message and let me come for an appointment.

Maybe you work in the front office for this doctor or service
provider. You miss the ball, don't send in the request for an
interpreter. I leave the office, defeated, and it's another two
months for my appointment to happen.

I didn't ask for this! I didn't ask for these disabilities. I'm
merely seeking the same service that normal people receive. Valid
people don't need interpreters. I know I'm invalid, and the fight
continues.

Maybe you work at an orthopedics office where they make and sell
leg braces. I need a new pair of Ankle-Foot Orthopedics. Medicare
approved this request three months ago. Yet I haven't been cast
for the braces. Why? You don't pay for interpreters. Your staff
says, "Oh, we don't do that kind of stuff." I can find a new
place to get my braces, and then you are off the hook. I don't
want you to get away with this, so I fight.

Or maybe you are a landlord who gets money for renting to people
with disabilities. Maybe it took you two years to replace my
sliding back door. I open the door to discover there is no
screen. I write you an email, but you dismiss my request because
all correspondence must come through the portal. But the portal
is not accessible for my technology. I tuck my tail between my
legs, have Dad ask for the screen through the portal. Only valid
people can enter a portal.

Maybe you offer services with people with disabilities, and you
are having a Summer leadership academy. I've been searching for
this kind of training, and I'm super excited to apply. But you
reject my participation. You send me a letter of denial stating
the reasons if lack of transportation. There is truth in this. I
can't ride a general bus or use paratransit. You also say you
can't provide personal care assistance. I re-read my application.
I didn't ask for a PCA. I didn't ask for an SSP. I requested two
tactile interpreters. I'm too much of a freak even for agencies
who work with people with disabilities.

I'm down to a simmer now. My arms are killing me because I wrote
this blog. Nothing has been accomplished. The war goes on.

Angie C. Orlando

July 2019

Permission is granted to share.

deafblind is not deaf plus

DeafBlind, Not Deaf-Plus

Presented to Deaf Culture's Club/Deaf Power Organization

Kent State University

April 30, 2019

Hi. My name is Angie Orlando. You've probably seen me around. I
am a woman, mother, aunt, daughter and sister. I am a writer and
author of Through the Tunnel: becoming DeafBlind. I am a cat
lover, Harry Potter fan, sugar-freak and Dr. Pepper addict. I'm a
voracious reader, a book fairy with rainbow wings and... and...
and.... I happen to be DeafBlind.

That's how I think of it, at the end of the list, and I happen to
be DeafBlind. My disability is part of who I am, but it doesn't
define me or control me.

Why do we need labels? Why can't I just be Angie? I suppose if I
want services, I need a label. I won't get an interpreter if I'm
just Angie.

Labels and identification are different. Labels are imposed on us
by society, to categorize our limitations and needs.
Identification is how we choose to be known. It's not always as
simple as it appears.

I know some people who are oral deaf who do not identify as Deaf
culture. There are people who are hard or hearing who do identify
as Deaf. There are even children of Deaf adults who are hearing
but self-identify as Deaf.

I fit under several labels: Deaf, blind, physical handicapped and
developmentally disabled. I identify as DeafBlind.

Let's talk about deaf-plus. Is it a label or identification? I
don't know. I did some research on the topic, but my technology
is limited, and I can't view videos. I came across this web site.
I don't know who created it. The title is "Supporting Families
When Hearing Loss is Not the Only Condition."

They state that "Deaf-plus refers to people who are Deaf or hard
of hearing who have other conditions that affect them medically,
physically, emotionally, educationally and socially.

Examples of these "other conditions" are: visually impaired and
DeafBlind, developmental, cognate and intellectual impairment,
orthopedic and physical impairment, specific learning disability,
autism, emotional and behavioral impairment, syndrome related,
traumatic brain injury and other health impairment.

Topics related to deaf-plus include: cycle of grief, on-going
medical concerns and life and death. "My Deafness won't kill me,
but I might die because..."

Bah! Enough of that. Why are they even talking about life and
death and the cycle of grief? Can they be more grim?

I knew this page was no good from the language: deafness,
deafblindness, impairment and all those big words ending in "ly."

When this club decided to do a meeting on deaf-plus, they asked
around to find people who are deaf-plus. My name kept coming up.
Thank you. I love you too. But I reject the label deaf-plus. How
can that be? I'm deaf and blind and have trouble walking. That's
three disabilities. I must be deaf-plus. I'm not, and I will tell
you why.

First, deaf-plus is vague. Plus what? You don't know. Does it
matter? Yes, because all those conditions have different needs
and require different services. DeafBlind is very different from
Deaf with autism or Deaf with a cognitive disability.

I recently used the term deaf-plus while talking about someone
else. I knew what "plus" meant for him but didn't feel it was my
place to say. I used deaf-plus because it's vague. I could
communicate that there was something else but didn't need to say
what. It was an avoidance technique.

Second, let's face it. A lot of people think deaf-plus means Deaf
with a cognitive disability. In this case we say "plus" to avoid
using a "negative" term. It's like "Deaf-plus", wink, wink...
"You know what I mean.

DeafBlind tends to include a communication disability and
information disability. We have trouble accessing social roles
and social settings. Think about it... Someone talks to me, and I
don't answer. They speak louder, but that doesn't help. The
person who is now screaming at me gets this idea... "Oh, she
must not be right in the head."

I have an awesome brain, but in this kind of setting I need a
communication facilitator.

It gets worse. I'm not fluent in ASL. My pace is slow, and I
don't know all the signs. Communication takes longer. People
think, "Got to be some intellectual issues with this one."

I fight this stereo-type all the time. The last thing I want is a
label that could imply that I do have a cognitive disability.

Another reason I don't like deaf-plus is that it shouts, "Deaf
first, Deaf matters most, Deaf before everything else." My life
can't be described as Deaf first, other things second. That
pattern doesn't work.

I brought up this discussion on a Facebook group called DeafBlind
Thought. One person said, "I was born deaf and grew up oral, no
signing. I later learned to sign on my own, but I'm isolated and
don't have the chance to use it much. Then I started losing my
vision. It's harder, but I'm doing okay."

He summed up his story by saying, "Deaf-plus doesn't fit my life
at all."

There are people who are Deaf with another disability, but they
don't identify as Deaf first.

For example, I know someone who has an intellectual disability
who is also deaf. Her parents, her school and professionals
focused on her cognitive problems first. Eventually she went to a
school for the Deaf. They didn't know how to deal with her, and
she was sent home.

I know someone else who has a learning disability. He's also hard
of hearing, if you need to know. He hears well with hearing aids
and identifies as learning disabled only.

Here is the big reason I reject deaf-plus: I am not deaf.

You are probably looking at me like I have three heads. Three
heads to go with my three disabilities. But I only have two. I'm
not Deaf, I'm DeafBlind. We write this as deafblind, capital D,
capital B, no hyphen, no space. It's one word because it's a
single, unique condition. It's not deaf, it's not blind, it's
DeafBlind.

I have two disabilities. I'm DeafBlind and I have trouble
walking. I say this because my needs as a DeafBlind person are
totally different from someone who is just deaf or just blind.

There is also a cultural component for people who are DeafBlind.
It's not about ASL, although most DeafBlind people are better
signers than me. What binds us together is touch and the
ProTactile movement.

ProTactile means touch communication but does not refer entirely
to tactile sign language. It's much bigger than that. ProTactile
uses touch during communication, in specific ways, that allow the
DeafBlind person 100% access to a communication setting. It
provides on-going feedback without the need to stop the flow of
conversation.

Two DeafBlind women from Seattle created ProTactile, which is
known as the DeafBlind way. It's a socio-cultural movement that's
uniting DeafBlind people through touch. ProTactile is the center
of our culture, and it is beautiful.

When I asked about deaf-plus on the Facebook group people said
things like:

I'm Deaf-Blind

What's deaf-plus?

That's no me, it doesn't fit my life.

Why do we need labels?

I'm human.

I agree. Deaf-plus is something out there, it's there, it's a
label, but it has nothing to do with me.

I'm DeafBlind. No, I'm Angie. Who are you?

Angie C. Orlando

Permission is granted to share

Deafblind culture and ableism

March 14, 2019

DeafBlind Culture and Ableism

Presented to Hiram College students taking ASL 2 or Ableism and
Ageism

Let's start with what it means to be DeafBlind. Imagine two big
circles. One is labeled Deaf, and the other is Blind. We push
them together so they partly overlap, like a venn diagram in
math. The overlapping part is DeafBlind.

This is an awesome venn diagram, and it might be true for some
DeafBlind people, but most don't belong in that overlapping area.

I think of it more like this -- There are two big circles labeled
Deaf and Blind. Far away... way out here... there's this tiny
circle, like an island, that is labeled DeafBlind. The word
DeafBlind is bigger than the whole island.

To understand what I'm talking about, you need to know what is
meant by the term "DeafBlind."

DeafBlind is an odd, often misleading term. We are Deaf, and we
are blind, so we are DeafBlind. make perfect sense. Only it
doesn't make sense at all.

DeafBlind is an umbrella term that refers to any one with any
degree of combined hearing and vision loss. Most people who are
DeafBlind are Deaf with low vision. They may have Usher Syndrome,
which is the leading cause of Deafblindness in the United States.

People with Usher Syndrome are born Deaf or hard of hearing and
begin losing their peripheral vision in the teen years. We call
this "tunnel vision." Another symptom is not being able to see in
the dark.

The fancy name for this set of vision problems is Retinitis
Pigmentosa (RP). It would be easier to say that people with Usher
Syndrome are Deaf and have Retinitis Pigmentosa. But that's not
easy to say, and most people don't know what RP is.

The trick with RP is that a person's central vision might be
20/20, but they are still legally blind. Their vision will
probably get worse over time. Most retain some usable vision.
Others gradually become totally blind.

Then you have DeafBlind people who are blind and hard of hearing.
They often use assistive listening devices and never learn to
sign.

Last we have the very small sub-category of people who are full
Deaf and full blind. I'm one of them

Why do they use the term "DeafBlind" when most DeafBlind people
have some usable vision or hearing? This creates an identity
issue.

Some people reject the label "DeafBlind." Some don't realize they
are considered DeafBlind. They may identify as Usher Syndrome or
Deaf with low vision.

Let's go back to that venn diagram. You may be wondering why I
made DeafBlind a far away island. If only it was a tropical
paradise. Not so much in real life.

Here it is, the obvious secret to the life of people who are
DeafBlind -- We are unable to use one sense to compensate for the
loss of the other. Thus we have needs different from those of
people who are just Deaf or just blind.

Since my venn diagram is imaginary, you can't see the label. The
word is DeafBlind. Deaf, capital D, no space, no hyphen, Blind,
capital B. It's one word, because it's one condition, a unique
condition, with it's own set of needs, problems, community and
culture.

My story is complex. I wish I had better sign language skills,
like people who are born Deaf.

I can't change the past. I was born hearing. When I started
losing my hearing at 13, I wasn't allowed to learn sign language.
When I rapidly became full Deaf and blind at 28, I only knew the
manual alphabet.

I couldn't find anyone to teach me sign language, so I entered
the ASL program at Kent State and took ASL 1 through 5. I've
worked hard to get where I am despite numerous challenges. I
haven't reach fluent ASL. Maybe in the future.

I found out about seven years ago that I have a super rare
genetic disorder called PHARC. Around 40 to 50 people world-wide
have been diagnosed with PHARC. The name stands for the main
symptoms: Polyneuropathy, Hearing loss, Ataxia, Retinitis
Pigmentosa and Cataracts.

I already described DeafBlind people in terms of degree of
hearing and vision loss. Another approach to categorizing
DeafBlind people is through communication methods.

There are signers and non-signers. Among signers, you have those
who use regular platform interpreters, those who need close range
and people who do tactile sign language.

There's variety in type of sign system -- ASL, PTASL, signed
English or fingerspelling only.

There are people who use speech and hearing, those who utilized
technology for communication and others who use print-on-palm.

But many DeafBlind people use a mix of methods, depending on who
they are communicating with.

I use tactile signed English with people who can sign and tactile
fingerspelling with my mother and son. I use text messages and
email with my father. I use my voice to communicate with hearing
people and oral deaf. I use shaky sign language to communicate
with Deaf and Deafblind people.

DeafBlind culture is another tough topic. How can there be a
united culture with all that variety? Some people say that
DeafBlind culture is a sub-culture of Deaf culture. For some, it
is. They are Deaf with low vision or Usher syndrome. ASL is their
first language. They say they are DeafBlind culture, but what
they describe is clearly Deaf culture.

I used to say there was no such thing as DeafBlind culture. It
was either Deaf culture or DeafBlind community. I don't believe
that anymore.

What's changed my mind? The answer is ProTactile: The DeafBlind
way. Just so you know... When ProTactile was new, it was written
as pro-tactile, no caps and with a hyphen in the middle. Just
like DeafBlind became one word, so has ProTactile, and we use
caps for the P and T.

Some people make the mistake in thinking that ProTactile means
tactile sign. It does not. ProTactile can be used with tactile
sign language, or it can be used with visual sign. It can be used
by one person signing visually with another person signing using
tactile while they talk to each other.

ProTactile means touch. It is all about touch during
communication. People who are Deaf have their visual signs and
facial expressions. That's their way. We have touch. That's the
DeafBlind way.

With ProTactile, people who are DeafBlind have 100% access to the
communication setting through touch. They use constant touch to
provide and receive feedback.

A Deaf or hearing person will nod. We use tapping to show we are
listening. This tapping could be on the arm or knee or back. The
intensity of the tapping varies depending on how interested the
other person is in what you are saying, just like with nodding.

You are telling a story and the person is casually tapping. They
are listening. Then you say something about Oreo brownies, and
they tap like crazy. They are very interested, very exited. They
are saying, "Give me a brownie right now!" You know they like
Oreo brownies.

Maybe you start talking about football. They don't tap much.
Their attention is wandering. They don't give a hoot about
football. It's time to change the subject.

There are other ways to give feedback through touch. For example,
you can show a smile or a frown. You can show anger. There are
all sorts of emotions. You don't have to interrupt the flow of
conversation to sign, "I am angry." You make the signal on the
other person's body as they communicate. It's much more natural.

Take laughter for example. You say something you think is kind of
funny. The response is ha ha ha ha. Without facial expression to
go with it, that sign is so bland, so fake. It's devoid of
emotion. Ha ha ha translates into, "You just said the stupidest
thing I've ever heard in my life."

You need to use the claw. In the DeafBlind community, we say
"Feel the Claw." It means "feel the laughter." Just like with
tapping, you can control the intensity to show how hard you are
laughing. Maybe a little bit means, "Hey, that's funny." Or you
can really go at it to say, "Oh, my god, I'm dying. You are
hilarious. I think I'm going to pee my pants."

You give this feedback while the communication is happening.
There's emotion and feedback without having to stop to say. "I am
laughing at you." It's awesome!

I like to use PT on my back with an interpreter when I'm giving a
presentation. That way I know how my audience is reacting. Are
they half asleep? Is someone sticking their tongue out at me?
I'll know. With ProTactile, I will know.

ProTactile is a socio-cultural movement. It's binding us together
through touch. Now I know that, yes, there is a DeafBlind culture
that is centered around ProTactile.

Our island is still an island, but it's growing. We are more
united now. It's wonder to finally find a place where I belong.

Now I want to talk about ableism, the discrimination of people
with disabilities.

I needed to research the subject, so I did a Google search. All
of the hits were videos. That's no good for me. I had to have a
friend send me some articles. I wonder if that's an example of
ableism. Web accessibility and access to information are serious
problems for people who are DeafBlind, especially those who read
braille.

All Deaf people and all DeafBlind people have experienced this.
Someone is speaking or signing, and you don't understand right
away. You asked them to repeat, and they say, "never mind." Or
they just walk away, which is a total communication killer when
you can't see where they went.

How about ableism and fair housing? I live in a twin-plex next to
an apartment complex. The landlord receives money from the
government for renting to people with disabilities.

I like my home and have no plans to leave anytime soon, but I
often experience problems with my landlord.

Honestly, I get the impression he thinks I have cognitive issues.
If I text or send him an email, he doesn't reply or act. I am
forced to have my father contact him on my behalf. It's
humiliating. I'm 45 years old and have lived here for over six
years. But complaints are only valid if they come from my dad.

This winter was a dangerous, on-going mess that I couldn't get
control of. It started with the hot water tank not working. I
took 4 cold baths in November. We finally got the repairman over
to fix it. He re-lit the pilot light, and said it was fine. Nope.
It took a week to get him back to fix the real problem. The tank
needed a new control panel.

That's when I smelled rotten eggs. I knew it was a gas leak, but
no one else could smell it. They didn't believe me or do
anything.. I was scared. I live in my apartment for two months
with a gas leak.

In late December the heater wasn't working right. They looked at
it and said, "The furnace is on, it's blowing air, there's
nothing wrong with your heater."

It was blowing air... cold air. At this point there was a gas
leak, and the heater was messed up. I was freezing and desperate
for help. A friend and her husband came over. He smelled the gas
leak and confirmed that the heater was blowing cold air. Why did
I need someone else to confirm what I already knew?

He turned off the hot water tank to stop the gas leak and the
heat came back. So I had heat, no gas leak and no hot water.

The repairman returned, fiddled around and declared everything
was fixed. Once again, I smelled rotten eggs. I knew there was a
gas leak and this time I would not sit quietly and pretend there
wasn't. My friends came over again, and we called the gas
company. They checked it out and said the hot water tank was
leaking gas. The guy wrote out his findings and taped it to the
hot water tank. The repairman came back, followed the
instructions, and finally everything was fixed. It was January
by that time.

Lack of interpreters is another way I struggle with ableism..

For years and years, I was part of a panel presentation at a
major medical center in Cleveland. The panel was called "Meaning
of Disability." and was presented to first year medical students
and staff. It was my doctor who got me involved.

I did this presentation eight or nine times. We got great
feedback. I loved being part of it.

Last year the doctor contacted my interpreter friend and demanded
she had to find and pay for my interpreters, or I would not be
part of the panel. What? What?

This friend was just an interpreter. She didn't own an agency and
didn't have any role in the panel, other than she helped the year
before. It made no sense. It was out right discrimination.

The panel went on without me, just like the doctor threatened. I
cried on the day of the presentation. It felt so wrong that I
wasn't there. The only reason they dropped me was the the need to
pay interpreters. As if a major medical center doesn't have the
money.

In other words, I was removed from the panel because I'm Deaf.
Perhaps that is the true meaning of disability.

Now I'm at war with the medical community and interpreter
agencies. I hurt my foot in June. In January I was diagnosed with
tendonitis in my thumb. I still haven't received medical
treatment.

Appointments have been postponed and canceled because of
interpreter issues. Last week we drove to Cleveland for an
appointment, but there was no interpreter. The next day I was
supposed to start physical therapy, after two months of
re-scheduling. No interpreter.

Medical staff blames the interpreter agency. The agency blames
the medical staff. Then I get blamed. All I want is medical
treatment. My need for an interpreter is why I'm not getting it.
Again, I'm being denied fundamental rights because I'm Deaf.

It's not easy being DeafBlind, and I also have physical problems.
I can't leave my house without help. It's not easy. I do my best
to cope. I have a strong will to live, and that keeps me going.

But whenever I get hit with ableism, I feel something die inside
me. It's a reminder that I'm not whole, I'm not valid, I don't
have a place in society. It's a horrible feeling.

Angie C. Orlando

March 2019

Permission is granted to share.