Keynote Speaker

Thanks to LPA for this opportunity to

• Return to Baltimore where three life-changing events happened to me:
  • graduated law school from the University of Maryland 40 years ago
  • my book Dwarfs Don’t Live in Houses was available at the LPA conference 35 years ago
  • acquired a mechanical aortic heart valve at Johns Hopkins Hospital 11 years ago
• Today I’m here to share my experience built on 70 years of living with dwarfism

In our time together my goal is to:

• convey my passion for advocacy on dwarfism and disability issues;
• give some tips on effective advocacy; and
• challenge you to be an advocate for positive change.

• Now if you’re thinking I don’t have what it takes to be an advocate. Please don’t let yourself off the hook, because I believe everyone in this room is already an advocate. Yes, even the children.

I came to this realization after a disability presentation to High School students. In the Q&A after my talk a student asked me:

Q. “How long have you been an advocate?”

I had to think about that one for a moment; then it dawned on me.

A. I’ve been an advocate for as long as I can remember. Always.

[Recalling this conversation is what inspired the title of the third book in my dwarfism memoir trilogy, Always An Advocate]

• As a child,
  • I remember asking friends to slow down so I could keep up
  • I learned that my voice mattered:
  • eldest of 3 children
  • only LP in the family
  • accepted by my parents as having equal value
  • from age 7 I knew Jesus loved me
• I knew I was worthy of respect and inclusion.
• As an adult, I continue to advocate:
  • I tell people who jump ahead of me in line, “excuse me, I was here before you.”
  • In law school in Auckland, NZ, I refused the request to stand on a chair for my photo ID and asked for the camera to be removed from the tripod and held at my level.
  • In law school in Baltimore, MD, I petitioned for a review of the decision that I study four Semesters to earn an American law degree.
    • Six Semesters is typical, but the American Bar Association would allow 2/3 credit for my NZ law degree.

Even though the dean said my petition was a waste of time, I persuaded the review Committee to give me credit for one half and only require three Semesters of study. I accepted the compromise.

• At the American consulate office in Auckland, NZ, I persuaded the Consulate General’s Assistant to begin processing my alien resident visa application as the spouse of an American citizen before we were married. The stakes were high. If not approved, —Robert Van Etten would have attended our wedding reception in Hobe Sound, Florida by himself.
  • 42 years later we’re still married
  • So clearly the marriage was not a sham for immigration purposes
  • We like to say, we get along so well because we’re both aliens:

—Robert’s from Jupiter and I’m from NZ

• But before we go any further, let me warn you against taking the wrong tack.

Take, for example, the literal warning my husband Robert received when self-advocating to reach an ATM.

• He backed up our Honda wagon in front of the ATM at our bank
• opened the hatchback
• crawled from the front seat to the back
• stood on the bumper, and
• reached forward to use the ATM

He quickly learned that not all ideas are good ones!

After witnessing Robert’s suspicious behavior, a police officer suddenly appeared and stopped him from leaving the scene.

But after seeing that he hadn’t emptied all of the cash into the trunk, the officer let him off with a warning,

“Don’t do this again!”

• All of these examples are about self-advocacy.

And speaking up for ourselves is where advocacy begins.

So what about Systems Advocacy?

This is where the changes sought benefit a whole community not just one person.

***5 minute mark

So let’s shift to LPA and Systems Advocacy which I have pared down to six main points:

1. Care Enough To Do Something

Our sense of injustice is aroused to the boiling point!

We say, Something has to be done about this!

So what brings your blood to the boil?

• not qualifying for the “sport” of hotel bed climbing
• shortage of taxi cabs equipped to take wheelchairs or scooters and paying exorbitant fees to hire a private company
• inaccessible diagnostic medical equipment
• out-of-reach Point-of-Sale terminals, gas pumps, elevator buttons, ATMs
• product descriptions and team names using the midget moniker
• inability to see in stadiums and theaters
• steps with no handrails
• heavy doors
• the list is endless!

2. Commitment Is Personal

We cannot expect others to do something if we won’t do anything.

In the 1980s, a teenage Little Person named Ginny complained in an LPA workshop about not being able to reach ATMs. She asked me when LPA was going to do something about it.

I didn’t have an answer for Ginny that day.

But nothing will change until “the somebody” becomes “the someone” who cares enough to do something!

I became that “someone” in 1994 when LPA President Ruth Ricker asked me to be LPA’s delegate on the International Code Council/American National Standards Institute A117.1 Committee on Accessible and Usable Buildings & Facilities (ANSI Committee).

As an attorney, I was qualified to represent LPA, but was I ready to commit to such an enormous volunteer task?

• The six-inch reach barrier applied not only to ATMs, but also to bathrooms, elevator buttons, public telephones, gas pumps, handles on doors and windows, appliances—everything open to the public with operable parts activated by a push, pull or turn.
• Robert forewarned me about the difficulty of the task.
  He remembered the telephone industry’s successful opposition to lowering the height of public pay phones when he worked for the federal Access Board as a communications engineer.
• But ringing in my ears was Ginny’s question about when LPA was going to do something about the height of ATMs?
  At the time, I had no answer for Ginny.

  Now I had no answer for LPA President Ruth when she said,

  “If you don’t do it, Angela, who will?”

• Not finding anyone else lining up to tackle the giant, I saw it as a calling from God to accept the position of LPA’s delegate to the ANSI Committee.

3. Be Courageous and Wise

The Serenity Prayer hung on the wall in my great grandmother’s dining room. I read it often:

God grant me the Serenity
to accept the things I cannot change;
Courage to change the things I can; and
Wisdom to know the difference.

For courage and wisdom, I look back more than 3,000 years and learn from the example of two Israelite kings:

• King David advised Solomon his son and heir to the throne who was tasked with building the temple:

“Be strong and courageous, and do the work.
Do not be afraid or discouraged,
for the Lord God, my God, is with you.”
(1 Chronicles 28:20)

• King Solomon whose wisdom was known throughout the ancient world wrote many proverbs, including this one that still carries water today: (1 Kings 4:29, 34):

“Speak up for those who cannot speak for themselves;
ensure justice for those being crushed.”
(Proverbs 31:8)

4. Can’t Change the World Overnight

Could take weeks, one year, 20 years, a lifetime, generations.

• In building codes, change is incremental:

Rather than tackle all dwarfism access issues at once, LPA’s first proposal targeted one section in the ANSI access code. Even so, the impact was enormous because it was the building block section that lowered the unobstructed side reach range from 54” to 48” for all elements with operable parts that are pushed, pulled, or turned.

***10 minute mark

• In the case of dwarf tossing, like a perennial weed, no sooner was it stamped out in one place, it popped up in another:
  • In 1985, it popped up in Chicago.
    • LPA shut it down through public relations.
  • A year later, it popped up in Philadelphia.
    • LPA shut it down through public relations.
  • Two years later, it popped up in Florida.
    • LPA shut it down with the 1989 law banning dwarf tossing in licensed establishments
  • The Florida business owners immediately relocated to New York
    • LPA shut it down with the 1990 law banning dwarf tossing in licensed establishments in New York
  • Dwarf tossing threatened to return to Florida:
    • Eleven years later (2001-2002), LPA shut down the legal challenge calling the law unconstitutional.
    • Ten years later (2011-2012), LPA shut down a bill to repeal the law as obsolete.

5. Communication is critical

• Be credible.
  • Don’t exaggerate
    • It might be tempting to say there are one million Little People, but as we know this is simply not true.
  • Don’t lie.
    • ANSI members feared that LPA would be back asking for another height reduction in the next 5 year revision cycle.
    • When I assured the Committee that LPA would not do this, one member advised me that it was ok to lie about something like this. I rejected the advice by saying: “not for me it isn’t.”
    • We need people to trust that what we say is true!
  • Be competent
    • Learn what you don’t know
      • When I began on the ANSI Committee, I was like a fish out of water among architects, building owners, building inspectors, contractors, equipment manufacturers, and the like.
      • I had to learn the lingo and how to write in building code language that was clear, unambiguous, and would be uniformly applied.
    • Know when you’re out of your depth and recruit help from those more knowledgeable.
      • Marilyn, the DREDF delegate on the ANSI Committee, regularly consulted with a disability friendly architect and often brought him from California to ANSI meetings in Washington, D.C.
      • I recruited help from a seasoned ANSI Committee member to tweak LPA’s proposed amendments to acceptable code language.
    • Know the system you’re asking to make a change:
      • When trying to pass a law in a State Legislature, find a bill sponsor in the majority party
        • Sounds basic, but I made a rookie mistake when looking for a sponsor to introduce the NY bill to ban dwarf tossing. I met with my representative and he agreed to sponsor the bill. However, he belonged to the minority party and the bill would struggle to gain traction unless sponsored by a representative in the majority party.
        • Tom Aquafredda got it right when he met with his representative who was a member of the majority party.

Tom used a wheelchair, had OI and a gentle, unassuming nature. And Tom was the one to persuade his representative to sponsor the bill in the NY Senate.

This is why he is in the list of those memorialized in the front matter of Always an Advocate

• Counter those who use delaying tactics

One tactic the ANSI Committee used against LPA was to call for more research on the proper height of operable parts.

In the past, calls for more research had been sufficient to ward off any moves for code revisions.

However, LPA called their bluff and launched the Measure-Up Campaign at the July 1995 national conference in Denver, Colorado.

LP adults lined up at Robert Van Etten’s Adaptive Living table at the LPA Expo for measurements of height, arm extension, eye height, and vertical reach.

***15 minute mark

The reward of Hershey chocolate may have induced some to line up for measurements, but the desire to use ATMs was a greater motivation.

• 172 were measured in Denver and
• 200 were measured when the Campaign continued at the Indianapolis conference the following year.

Ask for show of hands of those measured in Denver or Indianapolis

Let’s give them a round of applause to show our appreciation.

LPA’s research results pulled the rug out from under those determined to keep the status quo. The six-inch reach barrier was officially broken in the ANSI Committee in 1997 and became effective in the 1998 model code which would become law when adopted by municipalities or States.

Many LPs have said they think of me every time they use an ATM, but I give God the credit for making the impossible happen. My role was to do the work and trust God for the results.

6. Make Connections and Coalitions

• Network with those having a common goal:
  —constituents, allies, and supporters

• Constituents 
  – LP individuals
  – LPA groups—national, districts, chapters
• Allies
  The delegates on the ANSI Committee representing numerous disability orgs were key allies supporting LPA’s proposal to break the six-inch reach barrier.

  LPs alone did not have enough clout or numbers to warrant a height reduction in the ANSI access code. However, calculating that half a million people had a disability involving a reach limitation was not something the Committee could ignore.

• Supporters —care enough to help
  —family, friends, Medical Advisory Board (MAB) members, public

  Supporters were a pivotal group in all the campaigns to ban dwarf tossing as they deluged dwarf tossing venues and legislators with letters and emails.

  For example, the Florida legislator who introduced the bill to repeal Florida’s dwarf tossing ban, succumbed to LPA pressure and agreed not to pursue the bill’s passage. He disclosed that those who influenced him the most were the parents and grandparents who spoke on behalf of their family members.

  In New York, Dr. Charles I. Scott—Chair of the MAB in 1990—worked with legislative Committee staff to define dwarfism and avoid the law being held unconstitutional as too vague.

In making connections, it’s important to build relationships to keep lines of communication open with people on both sides of the issue.

My strategy of sitting next to different committee members at each ANSI Committee meeting—which lasted from one to three consecutive days—also gave me plenty of time to personalize the issue for those inclined to oppose any change to the reach range standard.

For example, after sitting next to the delegate representing the physical therapy association for a couple of days, I asked why she was voting with industry members against lowering the side-reach to 48 inches rather than standing up for the patients she purported to represent. The question caused her to think. And when the time came for the final vote, she switched her vote to support disability access.

For those entrenched in their opposition, I listened to their objections and prepared counter-arguments.

Closing Challenge – Be an Advocate for Positive Change

• We all have what it takes
• Believe that you’re worthy of respect and inclusion
• Build your skills with self-advocacy
• Pray the Serenity Prayer for courage and wisdom
• Care enough to do something
• Make a personal commitment to change a system problem
• Be patient; remember we can’t change the world overnight, but change is possible
• Communicate with credibility and competence
• Make connections and coalitions

LPA is our community, our extended family.

We are stronger together.

Let’s go out and change the world.