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.

 

Day 15: Hard Lessons

DAY 15: HARD LESSONS - Write about a lesson you had to learn the hard way

Here is a lesson that I’ve learned the hard way and still struggle with: I have no control over people or their behavior. I can only control myself. It took a lot of therapy and twelve-step meetings to convince me that I was wasting time and energy butting my head against a stone wall.

When I was twelve, my parents were already heavily invested in going to their Deaf social club and drinking heavily. I was left in charge of my 10-year-old brother. My parents would tell us to go to bed at ten. My brother usually conked out around then, but I stayed up. I had it in my head that if I stayed awake until they came home, they wouldn’t get into a car crash and die.  This kind of magical thinking went on right through my high school years.

It seems silly now, thinking that staying awake would control the safe return of my parents.

I mentioned in another post that Mom suffered from an undiagnosed mental illness. The drinking worsened for the mail her symptoms. I used to think that if my brother and I stayed on our best behavior and tried to please her, we could control her outbursts.  That was another failed attempt to control someone’s behavior.

Even though it was an ineffective method of coping, a need to control things so everything would be all right had become ingrained in me through adulthood. 

In truth, being a Coda sort of reinforced that strategy. From a young age, I was my parents' interpreter. The older I got, the more they would depend on me to make the best choices on how to react to issues that would arise. They would tell me, "You're hearing. You know the right thing to do."

I wrote earlier that my first husband, Rich, was diagnosed with Marfan Syndrome. Marfan Syndrome affects the whole body because it stretches connective tissue. It was the reason why Rich suffered congestive heart failure at age 28. A surgeon at Johns Hopkins saved him by replacing his aortic valve but he needed to make behavior changes: he needed to stay away from cigarettes, and he needed to lose weight.

Rich struggled with both. We quit smoking cold turkey when I became pregnant with our firstborn. I set down a rule: No more smoking. Not at home, not at work, not ever. I was able to stick to it, but Rich wasn’t. We didn’t work for the same company anymore, so he would smoke there.

One day, I smelled smoke on him. He tried to say it was another co-worker smoking near him, but it was on his breath, and I wasn’t buying it. I made a great big stink about it and pulled a guilt trip on him. If he continued to smoke and hurt his heart further, he might die and then what would our child and I do?

I thought guilt-tripping as a way to control Rich’s smoking worked.  I didn't detect any relapses for the next ten-plus years.

I was wrong.

After he passed away, co-workers brought all his personal effects. They included books of matches and an ashtray. I was surprised. “Did Rich smoke?” I asked.

They looked uncomfortable and then one of the guys admitted that yes, Rich would sometimes smoke with them outdoors during break time.

So, trying to control Rich’s smoking was a total failure too.

The thing is, by that point, I knew it was an ineffective strategy.  I’d been to therapy and twelve-step meetings, but I guess I hadn’t really and truly admitted that I had no control over anyone. I could only control my own thoughts, feelings, and behavior.

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. 

Day 8 Writing and Cats Are Good for the Soul

 

I started keeping a diary when I was about 11 or 12. It was a little pink book with a few lines provided for each day of the week. I used it mostly to write up a little synopsis of my two favorite soap operas: “Dark Shadows” and “One Life to Live.” Sometimes I would note something that had happened daily but hesitated to do much of that.

I also wrote creative stories, filling composition books with my scribblings. I was writing a story about a family with an evil stepmother. My mother thought it was all right to read the story because I left the notebook out. She was outraged, thinking that the stepmother was really her in disguise. She was right about that but continued in such a rage that I was nervous about writing anything else.

With this little pink diary, I found that the few lines they provided for each day of the week were not enough. I filled it out fast and so, with my allowance, I bought a larger-sized diary. I’d moved on to junior high and had a positively miserable year. It started all right. I had been placed in the highest track, which was supposed to lead to an earlier high school graduation.

The trouble started with an English creative writing story. We were supposed to write a fairy tale.  I wrote about a talking cat with a magic flying carpet that flew around the world. The cat met and befriended everyone she met in the world. It was quite unlike the stories the other students wrote. I guess I was socially immature for my age. The teacher asked me to read my story and while she was charmed, the rest of the class howled with laughter. To them, I’d written a babyish story and they wouldn’t let me forget.

I wrote about the daily torments and how I hated to go to school. Writing released a lot of the anger and hurt I felt inside but I wondered what my parents would think if they read this new diary. I began to hide it in different places to keep it safe from Mom’s prying eyes.

I was writing so much I soon filled that book too. These little diaries were pretty but not nearly large enough to fill my thoughts. I bought a three-ring notebook. That would be big enough and, not only that, but my parents also wouldn’t be suspicious about the purchase. Three-ring notebooks were part of a student’s school supplies.

I felt so much freedom. I didn’t have to confine myself to a few lines for each day of the week. I could write freely for pages and pages, or I could write nothing at all.

Writing in a journal is so cathartic. I felt apart from others to begin with because my parents were Deaf. They also drank too much. There was domestic violence in our house. Sometimes when they would fight, Dad would hit Mom. Sometimes they battled each other. I would hide in my room, locking myself in with my cat. I would write and write.

Mom had an undiagnosed mental illness, possibly bipolar. Her moods would fluctuate between calm, annoyance, and uncontrolled rage. She would turn on my brother and me and hurt us. I wrote about all that too. My journal and my cat were my therapists. I hid the notebook well, changing its hiding place often.

Not so very long, that notebook was filled and so I bought another one. Over the years, I must have gone through six or seven notebooks.

One year, we’d convinced Mom to see the doctor about her depression and rage swings. She went to our family doctor; there was too much shame in consulting with a psychiatrist, which is who she really needed. The doctor prescribed a drug called Sinequan. I don’t recall that it helped.

What I do recall is that after one of my parents’ fights, I had trouble rousing her one morning. Then I found an empty pill bottle on the floor. Frightened, I looked around her night table and found a note. The Note.  I ran downstairs to tell my father and then got on the phone to call for an ambulance. Dad hung up the phone. He didn’t want anyone to know what was going on.

After getting the emergency operator off the phone and while Dad was upstairs trying to rouse Mom, I called the doctor. He first asked, “What do you want me to do about it? Call an ambulance!” I suppose he must have heard the fright in my voice because then he advised, “If you can, get her up and walking.”

I went upstairs. Dad and I dragged Mom out of bed and then walked. At first, Mom was barely conscious but then, thank God, began to awaken. Once she was alert enough to brush us off, I ran downstairs to call the pastor of the Deaf church. I was beside myself.

The pastor said, “Pack a bag and get out of there. Come down here to the church.”

The first things into my suitcase were all my journals and then a few clothes. The suitcase was very heavy, but I hauled it to the bus stop and caught the next bus to that church. The pastor and his mother were waiting for me and, when I explained why my bag was so heavy, they couldn’t help but burst out laughing. They didn’t realize that those journals were the most precious things (next to the cat) that I owned.

Speaking of cats, all of my precious ones have been a part of my life since babyhood. At first, the cats were my mother’s. When I was about 8, I began bringing them home. My mom liked cats too and so she never told me ‘no’ when I asked to keep them. Petting them and listening to them purr always soothes my soul. Don’t get me wrong, I like dogs too. I am just a cat person and over the years have become a crazy cat lady.

I still write journals and stories but not with pen and paper. Rheumatoid arthritis has invaded my fingers so that it’s difficult to grasp a pen or pencil for long. Everything I write is done on my laptop now.

Do I still have my handwritten journals? Alas, no. I shared them with my first husband, Rich, in the 1980s. He cried. He said, “I don’t want you to have these memories for you to fall back on. I want to make new, good memories with you.” He asked if we could throw them away. I’d been rereading them and was experiencing what was later called PTSD. I wanted to feel better and so I said yes. We drove to a dumpster and threw them away.

Sometimes I regret that. Sometimes I don’t. I still remember a lot of what happened anyway, even without the raw and emotional words to remind me. What I do know is how valuable they were to me at a time I needed them most. And I currently have four cats.

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.