7 Of My Favorite Deaf Performers

161 words

1 minute read

TW: Gif Post

The very first time I felt seen and represented on TV, it was because I saw Linda Bove on Sesame Street.  She later appeared in my favorite childhood movie, and played a pivotal role there.

Related:  The First Time I Saw My Favorite Movie

Because the presence of Linda's character was so meaningful to me as a child, I wanted to share some of my favorite Deaf performers:

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LINDA BOVE - (Sign Language Supervisor - Deaf West's Spring Awakening)

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REN - (Eleven Things You Should Know About Deaf People)

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RYAN LANE - (as Travis Barnes in Switched at Birth 5x09 "The Wolf Is Waiting")

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SANDRA MAE FRANK - (in Kelly Clarkson's music video for "I Dare You")

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SHAYLEE MANSFIELD - (in the A&E documentary "Deaf Out Loud")

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SHOSHANNAH STERN - (as Dr. Lauren Riley in Season 16 of Grey's Anatomy)

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TRESHELLE EDMOND - (as Martha Bessell in Deaf West's Spring Awakening)

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How Unrealistic IEP Goals Put Me in Danger as a Disabled Child

1,901 words

15 minute read

I've been thinking about various IEPs, school projects and journal entries, and how they all reflect this insistence that I learn to walk with one crutch (and, eventually, with no crutches.)  

I had always thought this stemmed from seeing an older student on my bus in 6th grade who had a surgery and started out in a wheelchair.  As he recovered, he was able to walk independently.  His gait, looking back, seemed very much like CP-gait.

All this time, I've thought the desire to walk with one crutch (and eventually, not need them altogether) was based on an 11 year old's naivete and not really understanding CP and how it's different for everyone.  But it seems that there were ridiculously unrealistic IEP goals written down for me.  Many of them are patently unfair, but in particular?  The following, around crutch-use...

Related:  How to Include Kids In Their Own IEP

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GOAL #1:  Improve efficiency with crutch use.

SHORT-TERM INSTRUCTIONAL OBJECTIVES:  Tonia will cruise hallway while other students are present with no more than one episode of stopping on 3 consecutive therapy days.

PROGRESS MADE TOWARD THIS GOAL:  Attained.  Tonia still tends to hesitate occasionally, but with verbal cues, does tend to continue.

TONIA'S PRESENT DAY NOTES:  Why one of my goals was to walk in a crowded hall with the mobility aid I was least comfortable with, I will never know.  My stopping frequently was due to knowing that if I did not get out of the way / stop, kids WOULD knock me over.  Also, a depth perception issue.  I could not gauge how far away from me kids actually were, so I stopped preemptively to ensure my own safety.

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GOAL #2:  Improve balance.

SHORT-TERM INSTRUCTIONAL OBJECTIVES:  Tonia will align both crutch tips and her feet in a straight line on the floor in less than 15 seconds and maintain position for 30 seconds on 3 consecutive therapy days.

PROGRESS MADE TOWARD THIS GOAL: Unable to do at this time.  Tonia appears to be afraid and does not trust herself to balance over her legs.

TONIA'S PRESENT DAY NOTES:  This is not a trust issue.  It's an issue of an unrealistic goal being presented for a child.  It's an issue of someone with CP's body working differently than a nondisabled person's.  I have never and will never be able to achieve a goal like this.  Not without falling over and smashing my face or my head.  No wonder I was afraid!

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SHORT-TERM INSTRUCTIONAL OBJECTIVES:  Tonia will descend 5 steps with use of both crutches in less than one minute on 3 consecutive step data days.

PROGRESS MADE TOWARD THIS GOAL:  Tonia is able to descend the steps in less than 1 minute occasionally.  It is dependent on her determination for the day.  Will continue until consistent.

TONIA'S PRESENT DAY NOTES:  Again, way to blame the child for the reality that CP symptoms fluctuate depending on the weather, exhaustion, nerves, and any number of things.  If it was all based on determination, I would have achieved every goal the minute they were presented to me.  I tried so hard all the time.  It wasn't my fault.  

- IEP excerpt reviewed March 13, 1991.  9 years old.

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[Image: Tonia, 9 years old, precisely at the time these goals are being drawn up.  This is who was being discussed.  This is the child I was.]

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GOAL: Tonia will improve her functional independence with crutch use.

SHORT-TERM INSTRUCTIONAL OBJECTIVES: Tonia will walk with 2 crutches from her class to the office and back to her room in less than 8 minutes on 3 consecutive therapy days.

PROGRESS MADE TOWARD THIS GOAL:  Not met due to recent surgery.  Did task with walk[er] in 3 mins 40 secs.

TONIA'S PRESENT DAY NOTES: Why was it necessary for me to become a speed-walker?  I have never been able to walk anywhere in 8 minutes.  I can barely manage my apartment hallway in 8 minutes.  Also?  Who was in charge of these goals and was the surgery super sudden?  Why set such ridiculous goals if you know I'll be out of commission for months afterward?

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SHORT-TERM INSTRUCTIONAL OBJECTIVES:  Tonia will walk 50' with use of 1 crutch in less than 2 minutes on 3 consecutive therapy days.

PROGRESS MADE TOWARD THIS GOAL:  Unable to walk with one crutch as of yet after surgery this year.

TONIA'S PRESENT DAY NOTES:  And, there it is.  The evidence that even this early on?  Nondisabled adults in my world were pushing me toward this totally arbitrary goal.  Also, I don't know how to interpret the notation by the number 50 but it frightens me either way.  (50 feet?  50 steps?)  It's a lot.  And again, it's completely unecessary pre-surgery and unrealistic post-surgery.

The learner's IEP:
[ X ] Meets learner's current needs and will be continued without changes.

TONIA'S PRESENT DAY NOTES:  Like...I have zero words for this.  Read the following and you'll see what repercussions continuing crappy goals like this had on me.  I can't even.  Meets my needs?  Will be continued without changes?  This is just cruel.

- IEP excerpt reviewed May, 1992. Four months post major surgery.  10 years old

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My Happiest Day Ever

I don't have a happiest day.  I've had LOTS of good and fun ones but never a best one.  Here are some examples of good and fun days.  The first time I got to hold my baby cousin, the first time I tied my shoe, I really don't have a happiest day.  My HAPPIEST day will be in the future when I walk with NO crutches.  My one dream is to become an Olympian [Olympic gymnast] maybe Special Olympics first but my one wish is to become an Olympian.

TONIA'S PRESENT DAY NOTES:  It struck me, finding this again, a couple years ago, how stark it is that at 10 years old, I could not name a happiest day ever.  I could name wishes.  Dreams.  But my happiest day is based on nondisabled adults pushing me to do what I physically could not.

- 5th grade autobiography, age 10, Spring,1992.

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 Hi, If I had the choice of being the best LOOKING kid the most ATHLETIC kid or the SMARTEST kid in 6th grade do you know which one I'd pick?  I'd like to be the most athletic.  This is because since I was about 9 I've wanted to be in gymnastics lets see, uh, a Nickelodeon show like GUTS and eventually be in an Olympic event.  This may sound a little strange but I don't particularly enjoy stretching out or doing exercises (unless there's music on without it it's totally BORING!)

Related: 2020 Summer Blog Post Series: CP and Therapy

TONIA'S PRESENT DAY NOTES:  Even here, there's reference to stretching and doing exercises.  No mentioning that, in total, our exercise regimen took about an hour, post surgery.  I was often made to start over, when it was decided I was not trying hard enough, or doing the exercises right.  

While we were assisted with PT early on by therapists and parents?  By this time [3 months after a second hip surgery], it was our responsibility to do them, by ourselves.  Strength-building, stretching, biking.  All of it.  

Me saying I didn't 'particularly enjoy' stretching / exercising was the safest way I could think of to convey just how deeply I hated it.

- 6th grade, age 11, January, 1993

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I'd better describe myself!  Just in case I change in the next 20 years.  I have shoulder-length brown hair, blue-green eyes, and I'm 12 and a half years old.  My birthday is June 21.  I'm almost 5 ft tall.  I use crutches, which I'm hoping to get rid [of] in about a year or two...


TONIA'S PRESENT DAY NOTES:  This surprised me when I found it years later!  I could not believe that even here, I persisted in the belief that I could overcome CP, if only I worked hard enough.  But how could I believe anything else, when all the adults everywhere were telling me the same?

- 7th grade, age 12, December, 1993.

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TW:  Physical, emotional, verbal assault of a child, ableism.

It's the weekend.  I'm twelve.  Maybe thirteen.

Lunch time means, just eat your food.  Then vacate.

I'm doing that, when all of a sudden, it doesn't matter how much I try to keep a low profile.  I am noticed anyway.  And not in a good way.

"Tonia," the voice is impatient.

I glance up, fearful.

"Have you been practicing walking with one crutch?!" 

What?  

(My mind is reeling.  Racing.  Trying to catch up to wherever this is going.  It's brought up like this is something we discuss on a regular basis.  It isn't.  Like it's something I'm expected to have done.  I remember practicing from time to time over the past few years.  Getting pretty good at walking with just one, as long as it's the left.)

But it has not been a topic of conversation.

My mind races with the best way to handle this.  Obviously, I'm being noticed now, because of something unacceptable about my gait.  Something despised.  It'll make it worse if I lie and say I have.

"No, but I will," I promise.

"No, but I will," the voice scoffs, mocking me.

(Lunch is over by now, and the rest of my sibs are hurrying to clean up.)

"Just leave it!  Go downstairs!  Tonia!  Stay here!"

I am beyond freaked out.  

(What's going to happen to me?  What did I do?  Obviously, I didn't practice enough...but I didn't even know I was supposed to be practicing.)

"Now, you're gonna practice!  One crutch, dumbass!  Leave that one there!  Walk!  Out to the kitchen and back!"

I do, but fear is making my spasticity kick in hardcore.  It's harder to move.  Harder to do everything.  But I know I have to keep going.

After a lap or two, (enduring this voice screaming abuse at me the whole time) the decision is made to make things even harder.  This person stalks out to the kitchen and gets an empty Tupperware container.  Gives it to me to hold in my right hand (also CP-impacted).

Holding onto the Tupperware is almost more than I can do simultaneously.

"Stand up straight!  This is what happens when you don't stretch!" the voice snaps.

I make it back to the living room carpet in time to hit my knees.  I'm pulled to my feet by my hair:  "Stand the fuck up!"

I try, but it's useless.  I'm shaking.  My body won't work that way.  Not on demand.  Not ever.

"Get downstairs!  Fucking idiot..."

I'm crying, but trying not to.

I'm just glad to be away.

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Soon after, as 8th grade progresses, I am talked to about using my wheelchair at school part-time, in preparation for using it full time in high school.  After years of trying to overcome my CP, the surgeries, the nonstop abuse?  The wheelchair feels like giving up.

My heart breaks at being held to such unattainable standards by nondisabled people.  At being abused for what my body simply could not do under stress.

Today, I can't help but feel that I was set up to fail.

I can't help but feel that those unrealistic IEP goals helped justify unsafe treatment and abuse by adults in my world.

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10 Ways Our Great-Grandparents Showed Us Love

693 words

5 minute read

Our great-grandparents were born in April.  Their birthdays were within days of each other.  In honor of their birthdays - and their birthday month - here are 10 ways they showed us love:

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1.  THEY READ TO US:

Honestly, I don't have memory of this, and that's why pictures like this one are so priceless.  Because I don't remember ever not knowing how to read, and I have no memories of being read to before I knew how to read myself.  But clearly, it happened:

[Image: Great-grandma, center, reads to Tara, left, and Tonia, right, age 2]

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2. ADAPTED THINGS FOR US:

Related: How My Great Grandpa's Innovation Made It Possible for Me to Ride a Bike

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3. TAUGHT US:

To this day, I remember being around six years old, and - on my own - writing numbers up to 100.  I was so proud, I showed my great-grandma.  She gently showed me my mistake.  

I'd written every number after 20, 30, 40, etc. as 201, 202 etc. not realizing I had to drop the zero.  

She taught me to print the letters p and q and never made me feel silly for not knowing something.

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4.  FED US REALLY WELL:

We always at really well at great grandma and grandpa's house.  Homemade chicken noodle (or beef noodle) soup.  Turkey salami.  Raspberry dessert.  Pudding pops.  Fresh carrots or beans from Grandpa's garden.  

They let us get string cheese from the grocery store.  I still remember helping Grandma bake pumpkin chocolate chip cookies, though I'm pretty sure that only happened one time.

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5.  BUILT US A SNOWMAN:

Related:  Cerebral Palsy Awareness Month: Day 7: Do You Want to Build a Snowman?

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6.  PLAYED WITH US: 

Every night, whether we were living with them, or just visiting, we'd join them at the table each evening for a game.  When we were younger, it was Farkle or Dominoes.  

But from about six years old on?  We played Skip-Bo - all four of us.  Grandma and Grandpa against Tara and I.  We were always linking pinkies over the cards and doing made-up spells for luck.  Grandpa, would pretend to zap us playfully and say: "No hexes!" 

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7. SEWED FOR US:

Grandma was a pro at fixing our Cabbage Patch dolls (who we loved so hard their fingers and toes unraveled.)  

She sewed Velcro pockets for my walker, so I could carry things with me, and adapted our jeans with Velcro instead of snaps, so we could be independent in the bathroom.

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8.  REMEMBERED THINGS WE SAID:

Long after I'd forgotten, Grandpa continued to tell this joke about a little girl who saw her bus driver's feet and said: "You're socks are all wrinkled!"

The bus driver said back: "I don't have any socks on!"

I thought this was probably a joke he made up, and was surprised when he told me, "You told us that joke.  You came home from school and you told us, and you laughed and laughed."

9.  BOUGHT US A COCONUT:

One of my favorite memories with my great grandparents was going grocery shopping with them.  On a certain trip in particular, we passed the coconuts.  

Tara and I (again, at around 6 years old and fans of Sesame Street) had heard there was milk inside and we wanted to try it.  Grandma agreed to buy it.

Later, at home, Grandpa broke it open with a hammer.  We were super impressed.  Until a clear juice came out...and it did not taste like cow's milk at all.

But they let us be curious.  They let us try things.

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10.  SHARED MEMORIES OF THEIR CHILDHOOD:

We were visiting as teenagers, when Grandpa very casually told us that he could still remember the lines he was given in his kindergarten school play.  He was 5 years old in 1919, and very nervous, as he stood in front of a room full of adults and had to say the words:

As I stand up on this stage

My heart goes piddy-pat

As I watch the people wonder:

"Whose little boy is that?"

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How Does That Work: Interdependence in the Disabled Community

1,012 words

8 minute read

It's 2016.

I'm at the doctor's.  

This is not somewhere I go by choice.  I have enough medical trauma to want to stay away from anywhere medical forever.  But I've received a notice in the mail that tells me in order to keep living in the accessible place I am living, I need to go to the doctor to confirm that I still have CP...

...The disability I've had since birth.

I wait in the waiting room, trying to calm my nerves (trauma.)

An assistant calls my name, and upon seeing me in my wheelchair, gushes, "OH!  YOU'RE OUT WITHOUT YOUR CAREGIVER!  GOOD FOR YOU!"

This is problematic for so many reasons:

First, this assumes that a disabled person needs a caregiver to exist in public.

Secondly, If I had needed a caregiver, why was it seen as "good" for me to suddenly be without them?  

But I just nod and say, "Yup."  

(Because all the best comebacks come to me hours after the fact...and at this point in my life?  I'm not brave enough to say any of them out loud anyway.)

Finally, I'm in the office with the doctor.  I tell her the situation, even show her the notice.

"Where do you live?" she asks, perplexed.  (No doubt she's wondering what kind of place sends out these notices to their residents...)

I tell her.  "...It's accessible housing, for people with disabilities."

"Do you live alone?" she asks.

"No, I live with my sister," I tell her.

"Oh!  Is she disabled, too?" she wonders, thinking of my earlier statement.

"Yeah, she is..."  (Why my sister's disability status is relevant at my doctor's appointment, I have no idea...)

"...How does that work?" she asks, not even trying to hide her confusion at the idea of two disabled people living together.  "Who helps you?"

"We help each other," I tell her.

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There's this...weird demand out there...to consume content that involves disabled people being helped...and more than that...being helped by nondisabled people.

I know there are many people out there who would be super eager to read about the time a church friend stood behind me and helped me keep my balance for something like an hour while I (at 4'11") tried to make a basket in an outdoor basketball hoop.

I know there are people who would love to hear how a friend once walked me into our inaccessible church to use the bathroom, holding my hand the whole way.  (The fact that I had felt pressured to choose one mobility aid, and left my crutches at home, would go unacknowledged.  The fact that churches are not required to comply with the ADA would go unacknowledged.)

People love to hear how I crawled wheelbarrow-style - pulling myself with my arms - out of my grandma's inaccessible tub, my legs slamming on the ground when they cleared the edge.

(Look at how she overcame her disability!  It's so inspiring!)

Disabled people helping each other?  

It's just seen as weird.

We're othered, even more than we usually are.

This can be seen even in the prompts I still have saved from back when I wrote for The Mighty.

Related: Let's Talk About The Mighty

Write about receiving help in an unorthodox way.

The phrasing implies that we are always the recipients of help...and more...that perhaps our ways of helping each other are unusual or unaccepted.

But the truth is that often, the disability community knows how to help each other in ways that make us feel the most validated.  The most safe.  The most seen.

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Tara and I help each other countless times each day.  Some of these instances can be seen as typical divisions of labor in any household. (She does the dishes in the morning.  I do them in the evening.)  But some do not exist in nondisabled homes.

She does heavy lifting for me because I find it too strenuous.  I make phone calls for her to help lessen cognitive fatigue for her.

Some instances are even more seamless.  Pushing my wheelchair (when we went out in public back in the pre-pandemic days) allowed Tara stability when walking outdoors.  It also spared me the exhaustion of being overtaxed.  So, we both benefited.

We make each other's coffee. Tara makes mine because I cannot stand and pour water into the coffee maker without a disaster.  I make her cold brew to alleviate her executive dysfunction and / or other cognitive symptoms.

The things that are beyond difficult for one of us are usually easy or doable for the other.  We are happy to help each other with what we need.

There is no guilt.  There is no shaming about how one of us needs to work harder to be able to do a thing.  We understand limits and we respect them in and for each other.

[Image: Cups of coffee, side by side.  
One reads: NONCOMPLIANT DISABLED PERSON
The second: UNGRATEFUL DISABLED PERSON]

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Interdependence differs from codependency in that the help moves both ways.

A.H. Reaume writes beautifully about interdependence in her essay for Disability Visibility.  

Upon reading her essay, I wrote:

"... Our LIVES as disabled people hinge on interdependence.  As she says, 'It is what we give each other because we WISH [nondisabled] people had given it to us.'

"Perhaps, that's why it is so particularly painful when we are ignored, dismissed, shut down and abused...because...for us?  It is so second-nature to love each other this way...and it's like...aren't we worth this?

"We can't stay alive without help, none of us.   But...nondisabled people experience the help they need, for the most part, without guilt, without an extra thought.  It's like "of course" they deserve help.  But disabled people are reminded time and time and time again...we don't.

"...To see this articulated. This essential piece of our culture so often misunderstood, so often framed as "too much"...because it's not.  We are not too much.  We love the crap out of each other. Because if we don't, no one else will."

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