Disability Pride Month

 

I was 7/1/23 old when I learned that July is designated Disability Pride month.  We even have a flag, and I like it very much. The link explains the different colors and why it’s in the form of a lightning bolt. I especially like the concept of learning to work around the obstacles of living with disabilities.

I wondered what was so special about July. When I investigated, I smacked myself on the head. I should have known better. In July 1990 President George H.W. Bush signed the American With Disabilities Act (ADA) into law. I’d advocated for it; how could I have forgotten?

I was a teen and young adult when legislation finally began to pass recognizing the rights and equality of those living with disabilities. These laws included: the 1973 Vocational Rehabilitation Act Sections 503 and 504 (outlawing discrimination against people with disabilities in education and work), PL 94-142 Education For All Children Act (providing education for all in the “least restrictive environment’), and, finally, the ADA.

So, what is the difference between the VR Act of 1973 and the ADA? Basically, the VR Act applied to federal agencies and those institutions receiving federal funds. The ADA is applied everywhere regardless of whether a company or institution receives federal funds.

My parents were Deaf. By the time the VR Act of 1973 was passed, they were already in their 40s. They did benefit from it in that they could request an interpreter in certain situations. Another boon coming out of it was closed captioning. Now they could finally understand many of the programs they’d been missing out on, particularly the news.

PL 94-142 ensured that kids with disabilities could be educated with their peers instead of being segregated or sent to institutions. The process was called mainstreaming. Deaf students had more choices of colleges and universities to attend. Interpreters would be supplied for them.

Most of my 20+ years of interpreting for the Deaf were in the field of education. I interpreted for elementary, middle, and high school students mostly. This is just my opinion but after seeing the fact that the Deaf kids were isolated from their hearing peers, I no longer believed that mainstreaming provided the least restrictive environment for these kids. I began advocating transfer to schools for the Deaf, where the students would be among peers and could learn their native language and culture. For all other students, who could hear, mainstreaming is definitely the best way to go.

When the ADA became law, I began interpreting in so many other forums: workshops, employee training or meetings, doctors’ offices, hospital ERs, and mental health facilities. The ADA was the civil rights act for people with disabilities.

When I was an interpreter, my fingers were straight and long. Deaf clients complimented me on them. My signs were clear and easy to understand. I played an acoustic guitar and played barre chords with ease. During those years, I saw my mother’s fingers become crippled with arthritis. She was in a great deal of pain as her fingers became knobby and twisted. It hurt to see her become increasingly unwilling to use her hands.

Now I see my own fingers twisting and becoming knobby. Today they hurt like the dickens. I have both rheumatoid arthritis and osteoarthritis. I gave up one of my favorite activities because it became too difficult to enjoy: playing the guitar. My fingers won’t form a simple chord, never mind stretch to make a barre chord.

But that’s OK. The lightning shape of the disability pride flag relates to making the necessary adjustments. On the days I can’t hold a fork properly to cut my food, I grasp it in my left fist and saw away with the knife with my right. I use my computer to write 90% of everything instead of handwriting.

I have arthritis in joints throughout my body. Some days, between arthritis and fibromyalgia, everything is hard. I move slower on those days, but I don’t stop. I take a nap if I need to.

I have dysthymia and post-traumatic stress disorder (PTSD). Thanks to therapy and medications that work, I don’t have so many deep dark days. When I do, I’ve learned how to get through them. I don’t suffer from panic attacks anymore.

I’ve applied to get a bachelor’s from Rowan University. Thanks to the VR Act of 1973 and the ADA, I know I can receive accommodations. I can ask for a notetaker. I can ask for a longer time to take a test. I can answer test essay questions on a computer.

I am much more than a medical diagnosis or the prescriptions I take. I am a person with different abilities, those I’ve had from birth and those I’ve incorporated to get around obstacles. I am proud to claim the disability pride flag.

 

When One Door Closes, Look For An Open One

 

A little history. I am 68.

My first “real” job out of high school was as a clerk typist for an insurance company. I am a fast typist not only because of a class I took but because I am a writer with a Remington at home to type away on.

I went from there to the State of Maryland as a unit secretary for a hearing and speech office. I was fluent in American Sign Language as well and communicated with Deaf clients. I moved on to become an executive secretary at Gallaudet University.

One day, a Deaf client signed to me: “Why are you making coffee? You should be an interpreter.” I became certified with the National Registry of Interpreters for the Deaf.

After 5 years of clerical experience, I made a major career change. Over the next 20 odd years, I signed and voiced for Deaf clients in schools, doctors’ offices, hospitals, vocational training centers, workshops, plays, government and other meetings, and places of employment. I loved it.

My hands and wrists developed repetitive motion injuries in the 1990s. Up until then, an interpreter had to sign without a break unless the speaker gave one to the class/group. I kept interpreting, sometimes wearing splints on my hands. Many interpreters were developing similar injuries and so, finally, teams of two interpreters were sent to any assignment that would last 2 hours or more.  One would sign for 30 minutes and then rest, while the second would take over.

I also had a side gig, working alongside my first husband at a market research company. I began as an interviewer and then worked my way up to shift supervisor. Interpreting jobs slowed in the summer and working at this company kept the dollars coming in. During the school year, I’d limit my hours there to weekends.

My first husband died in 2001, and my hand/wrist injuries worsened. I had to stop early in 2002.

I met and married a wonderful man I met online. My 3 children and I moved to New Jersey. My new husband was a union sheet metal worker, a draftsman at the time. He thought I shouldn’t continue working unless I wanted to, and I decided to stay home to finish raising my kids.

So, there was a gap, a long one. I wasn’t inactive, however. I volunteered for different organizations. My favorite one was as a reader for Book Mates, a program to encourage a love of reading in kids who needed extra attention.

The pandemic and quarantine added to my gap.

After it was over, I realized the kids had grown up and moved out on their own. My husband had become disabled, tearing both his right and left rotator cuffs. He had surgery five times on the right shoulder, all failures, and most recently, a reverse shoulder replacement. 

We’d both received disability income and payments from his pension. At age 65, we went from disability income to social security retirement. Expenses increased; our incomes didn’t keep up.

I joined AARP. One of their articles was about older people working in remote jobs; it was supposed to be easier for us older folk to return to or remain in the workforce.  I wanted to bring in extra income so that we weren’t always just treading water.

How hard could this be? I was a proficient typist and had at least 5 years of clerical experience. I had another 4-5 years of market research experience. I couldn’t interpret anymore but for many of those 20+ years, I’d worked as an interpreter/tutor for many school districts.  I could explain away the gap by saying I was raising my kids and then the pandemic.

I followed some of the links AARP provided and became quickly frustrated because 1 link always led to another and to another and to another. The job I’d originally been interested in seemed to move further away from me instead of moving closer. I went to the State of New Jersey website as suggested but they didn’t have an option for remote jobs only.

My daughters suggested I stick with Indeed and stay away from the other help-you-find-a-job sites. They were on target. The others all wanted to send me on wild goose link checking places.  Indeed sent me lists of places I felt I could apply to, and I did.  I applied for entry level customer service or call center jobs. AARP said those were the types of jobs I’d be most likely get.

Wrong.

Some places sent polite emails thanking me for applying but after consideration, they’d decided to move on with other candidates.  Most didn’t bother to notify me at all. Month after month, job after job, I was getting nowhere.

Well, I thought, OK, I’m not proud. I’ll look for no experience necessary. Maybe my skills are too outdated. I got plenty of invitations to webinars. I went to several and about 10 minutes in, I knew they were either about sales or they were scams. By scams, here’s an example: I could be a travel agent, yes! And there’d be all these wonderful benefits…normally such a fantastic training deal complete with website and other assists would cost about $100/mo. but for this month only, it would be reduced to $69/mo. No, thanks.

Maybe remote wasn’t for me. How about our local school district? Oh, look, here are plenty of classroom aide positions. I applied for several and interviewed at two. I looked at the other people who came to be interviewed. I was the oldest. That shouldn’t matter, right?  I felt I did very well with the interviews but … no.  As for the other school aide positions, they all went to candidates without me being selected for an interview.

One early childhood center looked promising, and we went back and forth. One of the questions they asked (and many do ask this question, very sneaky) was in what year did I graduate high school? 1973. Well, it doesn’t take a rocket scientist to subtract 17 or 18 from 1973 and come up with 1954-55 as a birth year.

It seems our school district and Kinder Care may not believe a 68 year old can handle young children. Ever heard of grandchildren, people?

I heard from a company called Arise. They seemed very willing to work with me. All I had to do was register and then sign up for one of their many clients. They were all about remote, customer service jobs. I had many choices but finally selected Holland America Lines. Training provided.

I was so relieved! At last, after months of searching, a job! Part of the training involved what was called “prework” and “homework”. Believe me, it was work. The expectation was one would do 3 hours of this homework and then go sit in a 4 hour class from M-F for several weeks. I was determined to do it.

Meanwhile, I also heard from a tutoring company, and I was thrilled. I loved being in the classroom, working with kids and especially on reading/language skills. The tutoring organization  provided a curriculum to follow. I went through a brief paid training and then sent away fingerprint kits. I would be tutoring in several states and CA, TX, FL, MD, and MI all required fingerprints and background checks.

While I waited to get those packets, I began training on the Arise platform. One of my first biggest surprises was that training was NOT paid for. The philosophy, I guess, was we were getting all this wonderful FREE training and were self-employed contractors to boot. Oh.

My family’s reaction: unheard of! Why waste your valuable time doing all that prework and classwork and not get paid? My answer: well, no one else will hire me and I haven’t gotten all my security clearances from the states yet for the tutoring company.

Besides, learning about cruise travel was fun. The class was fun. The teacher was awesome. But there were big problems still coming. We were supposed to get codes from the client so that we would be able to access their systems so that we could practice. Weeks went by. No codes. Now we were supposed to go on the phone and get paid to take a few calls and practice. No codes, no calls. I began to get restless. It was getting close to Christmas, and I was hoping for the extra income for gift shopping.

We didn’t get the codes until two days before we were to go online full time without having full access to coaches. We felt like we were being thrown into the deep end of the ocean without a life raft. Worse, one of their systems wasn’t compatible with my laptop and their tech support couldn’t figure out how to fix it.

Long story short: I’d passed the course with a 96% but was unable to service the contract not because of inexperience but because of this tech issue.

It was depressing. I was back to square one most of January, applying for jobs without any real hope of success. Finally, though, my clearances for enough of the states came through so that I could finally begin tutoring. That was at the end of February of this year.

Here is another incorrect assumption I’d made about the tutoring. I thought I would be provided with a schedule. No. The way it worked was that opportunities would be “dropped” at a specific time and hundreds of tutors would compete for them.  Does anyone remember the Cabbage Patch Doll frenzy? That’s what it felt like!

Over March and April, though, I managed to pick up 10 half hour sessions meeting 3 times a week. For two months, April and May, I was bringing in a decent check. In June, school’s out for summer. There would be some summertime opportunities but all the teachers in the country were also out of school, and many were competing for the few summer jobs.

I needed a summer gig.

Here we go again.

After weeks of no-nibbles from places I applied to in May and early June, I went back to Arise. They had only one opportunity: Home Depot. OK, that’s a good company. This time I knew what to expect: no paid training. Still, it looked like I would start earning after just a week of training so it wouldn’t be so bad. I knew the drill: prework and homework.

I got it all done. I spent several hours Friday, Saturday, Sunday and yesterday getting all the required work done and even a bit of todays. I was feeling pretty good during the class. The teacher said something about a glitch in which 2 Home Depots had shown up and most of us had been in the “wrong” Home Depot. All the work was wiped out. Oh wow, I thought, how awful. I’m so glad that didn’t happen to me.

Until we broke for all the unfortunates to “do over” all the work they’d lost for the “right” Home Depot. I went to check and see how many modules I needed to complete for the Tuesday class and saw I had nothing. Nada. Zip. All that work I’d done was gone. It had been there when I went into class. Now, I was looking at 0 completed modules.

I went ballistic. Everyone else had scurried off to try and cram 4 days of work into a night, but not me. The teacher was a bit of a cold fish. She seemed incredulous that I hadn’t realized I might have been in the wrong class too. I’d seen there were two classes but went to the room with the same name I’d signed up for. Well, she said she would talk to the uppity ups and see if something could get worked out. She didn’t understand why I was the only one complaining, though.

I thought it was because everyone else is too young to know better or to scared to protest how unfair this is. What I did say was if I couldn’t get credit for the work I’d done, I would drop. “That’s your choice,” she said. Yeah, way to be all about those Home Depot values.

Don’t get me wrong. I’m not blaming Home Depot. They’re a good company. I blame Arise. You know that old saying, Fool me once, shame on you; fool me twice, shame on me? Well, I’m the fool.

Month after month, I’ve been beating my head against a wall trying to find a customer service or call center job. Last night, after I finally calmed down, I had a little talk with God. So, what’s up? I wondered. Is this a message that this is not for me? I should stop this and focus on … what?

Writing? Yes, but I need more discipline and guidance. Tutoring online? Yes, that door hadn’t shut, and no one seemed to care how old I was. I just needed more access to other tutoring companies. They all wanted tutors with bachelor’s degrees, and I only had an AA.

TB and I had a long talk about what I want to do. I have two gifts: writing and tutoring, born of being an empathic soul. So, there are two things I would like to do.  Yes, I am 68 but have no intention of sitting in my rocking chair all day.

I’m going to apply to Rowan and get a bachelor’s degree in education Inclusion. Having a BA will open more teaching and tutoring positions.

And I’m going to focus a lot more of my energy on writing. I have had a lot of experiences that I can share with adults and kids too.

Onward and upward, one foot in front of the other.

Day 16: Inner Child

What does your inner child like to do and how can you do more of it? What does your inner child need from you?

 

Believe it or not, this short piece took over a half hour to write.

 

I asked my inner child Catsie “What would you like to do?”, and she started singing “I Want To Break Free” by Queen. 

 

I asked, “Does this mean you want to break free of ME?”

 

And Catsie answered, “No, not really. You protected me all those years, and I love you for that. I hope you did it because you love me.”

 

“Well, yes,” I answered after a moment of hesitation. “But I didn’t really know about you until after I was all grown up and got therapy.”

 

“I know,” said Catsie. “That’s why I need to break free sometimes. Someday I would like us both to be one person.”

 

That surprised me. “I thought we were one person. You’re little Me.”

 

“Yes,” Catsie answered patiently. “But most of the time I’m in the upstairs attic room. You forget about me sometimes and I don’t like that. I get lonely.”

 

“Geeze, I’m sorry.” I felt awful. “I didn’t ever mean for you to feel lonely. What can I do so you aren’t lonely?”

 

“Invite me out to play with you.”

 

“I don’t play much now. I’m 68 now and my body doesn’t bend, twist, or run so easily. You are still 10. Give me your energy and I will take you outside and go for more walks. We can plant a garden together with Ted, Bill, and Tomas helping us.”

 

Catsie clapped her hands. “I would like that! All you have to do is think of me and I will be there.”

 

“I will think of you more often. I don’t want you to feel lonely. You’ve been up in the attic alone too many years.”

 

“I want us to tell my story. I want you to write it.”

 

“You want me to write about you?”

 

“Yes, you can see me and look into my mind to see what it’s been like for me, and how sad I felt when we sort of separated. I know it happened so that you could be brave and handle all that bad stuff. It was too scary for me.”

 

“You were too little. You are the child I was supposed to be, but you didn’t get a chance to grow up.”

 

“I can start growing up if you see me and hear me more. Then you and I will be one again.”

 

“I want to hug you.”

 

Catsie practically leapt into my arms. I held her close. I want to give her what she needs most of all: unconditional love.

Once again, this is my pledge to write for at least a half hour every day:

I am participating in the American Cancer Society’s challenge to write for thirty minutes each day in May. I do a lot of writing and I can meet this challenge. I plan to make a blog entry each day with what I’ve written.

I wanted to participate in memory of loved ones who fought cancer bravely but succumbed:

My brother-in-law Jeff

My sister-in-law Ann

My dear friend Kay

My Uncle Bob

My Uncle John

 

I also wanted to help raise money to support research and a cure for those currently fighting this vicious disease.

My Facebook to the fundraiser is here.