Posts Tagged ‘mental retardation’
I’m Memory of Bob Perske, a real hero to families and people with disabilities.
Bob Perske is a pioneer, a storyteller and a “Group Man.”
In his book, Circle of Friends, he tells the story of vulnerable people building circles of support.
Bob wrote the following speech to bring together Joe’s Circle of Friends who, even though they couldn’t stop his execution, used citizen advocacy like a jazz band, and blended their talents to prove Joe’s innocence 19 years later.
Bob ends with lessons learned and suggests action steps so Joe Arridy’s life and death will not be forgotten. Perhaps he couldn’t stop the injustice of his execution, but now there is a legacy which can help others.
It is my honor to share Bob’s words:
REFLECTIONS ON THE GROUP THAT FOUGHT FOR JOE ARRIDY
Written by Robert Perske but Voiced by Attorney Anne Treimanis
Pioneer Museum, Colorado Springs, Colorado, May 18, 2011
The Circle of Life:
Fifty-three years ago, I befriended a teenager who worked in a mission hospital in Espanola, New Mexico. His name was Richard Voorhees. He worked a morning shift in the hospital’s kitchen, went to high school and returned for an evening shift.
We got together a lot. He saw me as a mentor. Later, the mentorship was reversed when Richard Voorhees went on to become a skilled professor of sociology and anthropology.
That’s why, in 1992, while doing research in Greenwich Village, New York, Voorhees discovered a poem in an out-of-print book. He sent it to me and said, “I’ll bet this grabs you.” The poem described a warden “who wept” as he watched a death row inmate playing with a toy train on the floor of his cell.
For more information on Joe Arridy
On another occasion, Voorhees taught me how to feel a deep respect for trumpet player, Miles Davis. Davis was uncanny when he played in combos with other great musicians. Davis never played solos. He said, “I play what WE can play; NOT ME. I never play what I can play. I am a “group man.”
I THINK MILES DAVIS WOULD HAVE BEEN MOVED BY THE WAY OUR GROUP HANDED OFF TO EACH OTHER THE SAD MELODY OF JOE’S LIFE.
The Sad Melody of Joe’s Life:
• The poem about the warden who wept was sent to Watt Espy, the archivist at the Capital Punishment Project, in Headland, Alabama.
• Espy researched and connected the poem to the execution of Joe Arridy. He sent a packet of news clippings and detective magazines on the case.
• News reporters and history archivists up and down the slopes of the Rocky Mountains helped with the search.
• A book about Joe Arridy’s life and death was published.
• Pete Strescino, a reporter for The Pueblo Chieftain wrote a review of the book.
• Screen writer Dan Leonetti read the review and the book — and then wrote a screen play called “The Woodpecker Waltz.”
• A California film producer named Micheline Keller read the screen play and shed tears like the warden did.
• Teddi Roberts, the executive director of The Arc of the Pikes Peak Region and the members of her group offered a home base for many who worked on Joe’s case.
• Arc Street Worker, Craig Severa, became Joe’s “foot man,” “bag man” and “on-the-street cheerleader.”
• Attorney Anne Treimanis created a website www.friendsofJoeArridy.com. She did it at her own expense and filled it with every pertinent fact she could find on the case.
• The Arc organized a fund raiser to pay for a dignified tombstone that replaced that awful rusty motorcycle license plate marker on Joe’s grave.
• The Arc gathered 50 of The Friends together for a tombstone dedication ceremony at Joe’s grave.
• Mike Radelet, one of the nation’s leading spokesmen for stopping death penalties came to the ceremony.
• Photographer Antonio Sanchez created a montage of photographs of the group in action.
• Antonio Sanchez and Dan Leonetti talked Denver Attorney Dave Martinez into attending the tombstone ceremony with them.
• Attorney Martinez became interested in the case.
• Then all of the Arridy files were transported to his office in Denver.
• Attorney Martinez worked off and on with all of us for the next three years before writing a petition to Governor Bill Ritter, Jr.
• Terri Bradt, the granddaughter of Attorney Gail Ireland, heard about The Friends and she joined them. Then she wrote a book about how her grandpa rose up and fought like a tiger to save Joe’s life. She described how Ireland managed to get at least six stays before Governor Teller Ammons called the prison warden and ordered Joe to be killed within the next few minutes.
• Lisa Cisneros, Director of the Colorado Alternatives to the Death Penalty (CADP) offered her organization’s support.
• A heart touching song entitled “The Woodpecker Waltz” was written by “Identity Traveler Tom Garcia.
• A lovely, tender-voiced singer named “Molly” keeps the tears flowing when she sings Garcia’s song.
• Attorney Annie Treimanis recorded the song for all to hear by placing it in Joe’s website.
THEN CAME A SCARY DAY
• On October 27, 2010, Attorney Martinez delivered a 523-page “Pardon Application for Joe Arridy to the Governor of Colorado.”
• It contained:
— The Petition and Footnotes (41 pages)
— The Legal Memo (11 pages)
— Exhibits (173 pages).
— Affidavits in Support of the Petition (88 pages)
— Letters of Reference in Support of the Petition (210 pages)
THEN CAME THE GOVERNOR BILL RITTER’S ANSWER
• On January 7, 2011 — exactly 72 years to the day when newspapers announced Joe Arridy’s death — Governor Bill Ritter, Jr. issued a posthumous pardon.
THE GOVERNOR DID NOT STOP THERE
• He went beyond the expected by writing an in-depth three-page press release that went to newspapers and electronic media up and down the state. In it he explained in rich detail why he issued the pardon.
AFTER THE PARDON WAS ISSUED, OUR GROUP EXPANDED
• We were pleasantly surprised when relatives of Joe suddenly came out of the darkness and celebrated in public with us.
THEN CAME ANOTHER SURPRISE!
• We learned that Maria Tucker, a member of the Arridy family was employed as The Special Collections Manager for the Pueblo Public Library.
• Immediately, Dave and the group arranged for the transfer of the Arridy files to Maria who is now archiving them in the Western History Division of the Pueblo Public Library.
I AM AMAZED BY ALL THE SOLID PRODUCTS THAT HAVE BEEN PRODUCED THAT WILL NOT GO AWAY.
• There is a book about Joe Arridy’s life and fate.
• There is a book about Gail Ireland’s legal fight to save Joe’s life.
• There is “The Woodpecker Waltz,” Dan Leonetti’s heart touching filmscript.
• There is the website.
• There are hundreds of facts about Joe Arridy now being sent into cyberspace for the whole world to read and ponder forever.
• There is Dave Martinez’s petition for Joe Arridy’s pardon and the Governor’s response now filed in the vaults of the Colorado State Archives.
• All files on the case have been archived in the Western History Department of the Pueblo Library.
NOW COMES ONE MORE ROCK-SOLID PRODUCT!
• Five new words have been chiseled deeply into the face of Joe’s new tombstone. (See picture above.) They say:
“HERE LIES AN INNOCENT MAN”
• (Craig Severa will probably go to jail for adding them without asking permission from government officials who rule on such things.)
• Tomorrow all of us will go in a caravan to Woodpecker Hill to dedicate it.
IT TOOK 19 YEARS OF STRUGGLE
BEFORE WE COULD PUT THOSE WORDS ON JOE’S TOMBSTONE!
NOW, I SAY LET’S GO FOR ANOTHER 19 YEARS!
• Let’s apply what we learned on other heartbreaking miscarriages of justice.
• By the end of this next segment, I will be 103.
• So let’s get going!
• Here are five issues I would like to see us tackle.
1. WE NEED TO GAIN A CLEARER UNDERSTANDING OF THE HUMAN “WILL TO BELIEVE.”
As a young dad, I lectured my five kids about putting my woodworking tools back on their assigned hooks in the garage after they used them. Once, when one of my tools was missing, I yelled at the son who failed to put it back. I nailed the little guy. I harangued and harangued and I didn’t let up . . . until my wife softly took my hand and led me to the place where I had left the tool!
After sitting in many courtrooms, I have sensed how that wily little rascal, “the will to believe,” can corrupt the true facts of a case.
2. WE NEED TO STOP THE DEATH PENALTY
I shudder when I try to figure out how one mortal man can legally execute another mortal man. The Supreme Court’s ruling, in Atkins versus Virginia in 2002, did ban the execution of persons with intellectual disabilities, but I can’t let myself off the hook until the rest of humankind has this legal protection as well.
3. WE NEED TO DO EVERYTHING POSSIBLE TO SUPPORT AN ORGANIZATION CALLED THE “MURDER VICTIMS’ FAMILIES FOR RECONCILIATION.”
I am deeply touched by a certain fast-growing movement of families whose loved ones were murdered. Members of this group meet together and help one another to stop the agony that comes from screaming for “paybacks” for the killers of their loved ones. Now hundreds of murder victim’s families are helping one another to find a reconciliation. For them:
“Reconciliation means accepting that you cannot undo the murder but you can decide how you want to live afterwards.”
4. WE NEED TO FIGHT FOR THE VIDEOTAPING OF CRIMINAL INTERROGATIONS.
Due to our faulty “will-to-believe” attitudes, we will never “get the truth and the whole truth even with God’s help” when officers and suspects merely swear on the witness stand about what happened in the interrogation room. I believe that:
Judges and juries must be helped to see and hear for themselves everything that went on in the interrogation room. In this digital age it can be done by videotaping.
5. WE NEED TO RESPECT THE GOODNESS IN POLICE OFFICERS
I cannot name a school teacher who became a positive force in my life. But I can name a cop who did. His name was Bob Swanlund. He crossed my path on the inner streets of Denver when I was a teenager. He took to me and I sure took to him. On days off, we pitched a tent on Squaw Peak, the 11,540 foot mountain, 29 miles west of Denver and just in front of Mount Evans. We camped up there at least 40 times in three years. He became a father figure to me. During that time, I even tried to walk like him and talk like him. We stayed close until I went into the service in World War II and he became a department head in the Colorado State Patrol. During that period, he gently drummed into me the basic mission of every good police officer:
“The mission of every good police officer is to insure the safety and security of the neighborhood in which he serves.”
There is no job that is more noble than that.
SO NOW YOU AND I WILL BE MOVING ON.
I plan to go as a true believer:
I believe in God.
I believe in Evolution
I believe that all of us are brothers and sisters who were tied together by a single DNA match millions of years ago.
I believe that our earth revolves around the sun.
I believe there are thousands of solar systems like ours.
I believe that Martin Luther King was right when he said that “the arc of the moral universe is long but it bends toward justice.”
I believe that someday I may meet with Joe Arridy . . . I want so very much to do that.
In my career I came to care about many people like Joe:
So concrete in their thinking
So unable to figure out all of the complexities going on around them
So trusting of those who understand more than they could
So quick to respond to kindness from others.
So I believe that someday I will be able to get down on the floor together with Joe and his train. . . and both of us will be laughing and shouting:
“Train wreck! Train wreck!
Each of us “wills to believe” our government and justice system will find and punish the guilty, and free and protect the innocent. It is unsettling when the system doesn’t work. What are your thoughts?
Should people who have the label of intellectual disabilities have additional protections in the criminal justice system? Are the above action steps Bob suggests, so drastic and costly they cannot be implemented?
Bob’s song reminds me of Jazz, where each musician plays their own instrument and contributes their soul to the song. The members of Joe’s song were attorneys, friends, organizations… each adding their voice to the music. Is there a way to use each of our talents to work for social justice and change? Are you a “Group Man” or “Group Woman”? Is the song of Joe Arridy really a sad song?
Keep Climbing: Onward and Upward
All my best,
Bob we love you.
Our House of Cards|Disability Style (Part 2)
I am going to try to describe what happened to Aaron, my son, when he was 36 years old. Aaron has the labels of autism and developmental disabilities. It is a complicated story. In the comments, let me know if this makes sense.
Click on the Following Articles for Additional Background:
Have you ever rented a house or apartment?
If you answered “yes” you are like the majority of us. It is a typical, normal experience, right?
You sign a lease.
You pay your rent on time.
You take good care of the inside of the house, providing the furnishings.
You pick up the sticks and papers in the yard.
You pull weeds, mulch and plant flowers.
You don’t put the garbage out until after 6 PM.
You get along great with your housemate and the neighbors.
Everything’s great, right?
In Aaron’s case, he follows all the above, and has lived there for over 9 years.
In addition, since we figured he’d be living there the rest of his life (possibly 60 years) Aaron paid $1000 to build a patio on the back of the house.
Aaron got a HUD rent subsidy so he would only need one other housemate to help pay the rent. With his family, he even showed the owners of the house (a non-profit) how to get HUD approval.
Perfect tenant, right?
But, things are not perfect.
Because of his severe disabilities Aaron and his housemate need 24/7 support staff.
The company that manages the support staff has organizational, financial, and other issues (not unlike most residential companies).
So, though we love and trust Annie, our terrific head staff person, the company can’t ever seem to get additional staff to help–especially on the weekends.
The company continually blames Aaron saying his autism and intellectual disabilities are more difficult than other “clients,” so no staff want to work with him.
So we are stuck.
The county also says all the people who live in a house have to have the same residential provider.
So Aaron, Jack (his housemate/guardians) have to agree before we could change providers.
The county also tells us all the providers have the same issues, so it wouldn’t really make much difference.
So we suck it up, but NOT quietly
With tremendous effort and lots of positive thinking, we keep working to make things better, and fall into an okay routine.
The Plot Thickens
What would you think if one day your landlord calls and says, you have a vacant bedroom in the house and there is a homeless person with severe disabilties who needs a place to live?
Further, the county is short on money and passed a regulation saying all empty bedrooms will be filled.
And oh, since you don’t own the house–tough shit!
Oh, and by the way, the residential company you endure will now be in charge of three people. So if you want to change companies you will need not two–but all three people/guardians to agree before you can change.
They do promise additional quality staff for a couple hours in the morning and evening to help get everyone dressed, bathed, toileted, fed, and groomed. But we have been with this company for over 9 years and know they often make promises they can’t keep.
Again, these are not evil people, they just don’t have the support system THEY need.
The Perfect Storm
If this was a Stephen King novel, at this point in the story there would have to be some unforseen twists to really make things interesting.
Since, being a person with a severe disability isn’t drama enough, sure enough The Perfect Storm overturns the barely floating status-quo boat.
1. We still have trouble finding adequate staff.
2. Jack, Aaron’s housemate, “falls,” breaks his leg and is now using a walker (with great difficulty).
3. The replacement staff are “trained” by the supervisor over the phone. (Yep, couldn’t make this up.)
4. Aaron’s behaviors are increasing and when switching to new medications, the new staff (trained over the phone) accidently gives an overdose of Zoloft.
5. The county, like all government agencies, is desperate for funds.
6. The visit for the NEW housemate is set up for Tuesday night. Like it or not. (another post)
7. Make up a couple more dramas and they are probably true.
Since the county and the residential provider both profess they follow the principles of normalization, inclusion, self-determination and John McGee’s Gentle Teaching…. let’s start there.
A normal person rents a house or apartment:
Unless they violate the terms of the lease, the landlord doesn’t care what you do with the rooms in the house. In fact, they would only care if you brought in an extra person.
A person with a disability rents a house or apartment:
The landlord can demand you put a perfect stranger, with severe disabilities, in one of the rooms.
Even if you say, “These houses aren’t private”– can you imagine going to any other group of people in HUD owned homes, people in the projects, people who are poor, elderly, unemployed, needy and telling them they HAD to add a stranger to their household?
Hey, most people don’t even want to have relatives and people they know move in. Strangers, I don’t think so.
The house is in a residential neighborhood of single family homes. The houses is small and not zoned for a group home.
Adding one or two more housemates will mean there are twice as many cars, twice the number of staff, twice the number of pick up and deliveries.
One of the reasons the neighbors have been so nice, is they got to know Aaron and Jack. Our efforts to blend into the neighborhood and keep the house looking good has brought a level of acceptance. There is a delicate balance for inclusion in the neighborhood.
It seems when there are budget cuts–self-determination and individual choices are scratched off the books.
There is no way adding a new housemate is in Aaron’s best interests.
Aaron and Jack have had a terrible time getting quality staff, period.
Few will take them into the community. As Aaron’s behaviors have deteriorated in the last year and he is on more medication, there is less incentive to take him even for walks in the neighborhood, as well as into neighborhood stores…. Aaron is already isolated. Adding a third housemate will make this even more difficult.
Dang, let’s not even go there.
This isn’t all a surprise. In 2009, my husband and I challenged the county board’s authority to do this. Earlier this year, we were alerted this might be happening. See above related posts.
I keep hoping there is some sort of HUD requirement saying the government can’t just bring strangers to live in your house. (There is that constitutional protection against the government forcing people to house soldiers.)
I keep hoping some sort of civil rights, or just human compassion will prevail.
I keep hoping the fact that there have been two MUIs in the house in the last couple months (broken foot and overdose) will give people a clue that the house is in crisis.
I keep hoping the history of lack of adequate staff will also tell people that poorly paid and trained staff taking care of two men who need total care is a difficult job. Adding a third person is ridiculous.
I keep hoping that SOMEONE will notice the company in charge is filling for bankruptcy–duh! Do we really think it is safe to put MORE people in their charge?
We are using every avenue to fight this forced placement.
We are also trying to get the county to think outside the traditional funding box.
For years, we have heard about micro-boards, foster care, private providers, HUD houses, community initiatives, pairing people with disabilities with people who are poor, displaced, out of work….
Where are the creative thinkers who used to work with us? Where are the professionals who are being paid to problem-solve? Where are my friends who I trusted and gave years of volunteer time?
God knows I cry for the poor man who needs a home. If we weren’t in such turmoil, I’d personally offer to help him.
God knows I also hear from my relatives and neighbors that the government is too big and needs to be cut.
God knows I even hear some people tell me, “You created this defective child, it is your responsibility to take care of him.”
Anyone have any ACES up their sleeves? Any trump or wild cards? Hey, I’ll even consider some creative card tricks *wink wink*.
Thanks to everyone who has sent such kind notes of encouragement. We will survive. Aaron will survive.
But, geez louise… I figured out the Medicaid Waiver, I figured out the HUD rent subsidy and now people all over the area are using those supports. I’m exhausted.
We’ve taken Aaron home with us 15 of the last 30 days because of the turmoil in the house…And that was before the notice this week of the new housemate. Share your thoughts.
Keep Climbing: Onward and Upward
All my best, Mary
Living in a House of Cards| Non-Profits, HUD, Medicaid Waivers (Part 1)
My friend Debbie Wetzel always said the human service system was a house of cards.
As parents of people with severe disabilities, we need many agencies, many people working together to get basic services.
The right cards are usually hidden from sight. The agencies hope you don’t need them, won’t use them for a long time, and won’t mind their card tricks.
When your child is in school, the ace up your sleeve is the opportunity to go due process, that brings some accountability. However, there are no mandates for residential or adult day services. There is no due process.
It takes a Herculean effort to hold a house of cards together. One piece falls–the whole house tumbles down.
And yet families need all the different agencies and services to try and create a decent quality of life for their vulnerable children.
Even with great transition and long range planning it is difficult to know what to do. Here is Aaron’s Dream Plan number 4. (click here)
Right now Aaron’s house of cards is falling down. Aaron has autism and other developmental disabilities. He is 36 years old. He has been living in a residence for almost 11 years.
It is complex and has taken a TON of work to make every card fit in place. I thought I would start Part One describing some of the pieces of our house of cards. I’m hoping someone will have ideas on how to solve our crisis.
Aaron and his housemate, Jack, rent the house from Resident Home, a non-profit. They have lived there for over 10 years and I think the Resident Home does a good job of keeping the house in good repair.
The house was acquired with a $10,000 grant from the state (for the down payment). Aaron qualified as the person with a developmental disability that needed a home, so it was because of Aaron that Resident Home got the grant. The house had to be located in the city limits of Hamilton, Ohio and there were other restrictions. But, it was the timing, and Aaron’s eligibility that got the initial money.
Aaron signed the lease in his name.
Aaron also put $1000 of his own money into building a patio in the back yard. Tom and I take great pride in keeping the yard clean of trash, tree limbs (the lawn service won’t pick them up) planting flowers, mulching, trimming shrubs….
The house met the current zoning laws. Because there were only two people and one staff person living as a single family unit, there was no need for public hearings or zoning changes.
HUD Approval and Inspections
Resident Home had to get the house HUD approved and meet inspections a couple times a year.
I liked the idea of inspections for safety and hazards by an independent inspector. Since Aaron can’t talk or tell us what is going on in the house, and the staff might not have the expertise–or the will, this provides another layer of protection to Aaron. Plus, if the resident was abusing the house, it provides a layer of protection to Resident Home.
Since Aaron will probably live in this house for the rest of his life, Resident Home has a steady tenant, almost no turnover, and guaranteed rental payment for their property investment.
When Aaron and Jack moved in, we had a room created by taking the back part of the two car garage (obviously, Aaron was never going to drive). This converted room became the permanent address for Jared, our full time caregiver. He stayed for over two years. When he moved, part-time staff slept and had an office in the room. The room has no closet (so technically isn’t a bedroom according to building code) and because it was an addition, the heating and air conditioning doesn’t work well. It’s hot in the summer, cold in the winter. The little air conditioning unit fills the window that was added. There is no outside exit.
It took me over 3 years to figure out the HUD funding eligibility for Aaron. My brother rents HUD houses, so he helped.
Aaron was the first person with a significant disability in the state of OH. to get the subsidy. It took many meetings, and finding loopholes in the fine print. Up until Aaron got the subsidy, there were issues of two non-related people living in the same home (thanks gay rights advocates) and the fact that there was a caregiver staying in the house (thanks senior and elder care advocates).
We were told parents could own the house because there was such discrimination against people with disabilities and housing shortages. But, we were also warned that this could get tricky. Not sure where it stands in 2011. Also, initially we were told that if there were 2 people with disabilities in the house and a full time caregiver, they could apply for 3 bedrooms. Since I wasn’t able to work for pay most of my life, we were grateful Resident Home was willing to buy the house.
Safety Issues–Staff Room
A bedroom with a door that locks was considered a safety issue since there have been caregivers (mostly women-some quite elderly) who are watching men (some of whom have abuse and labels of mental illness). Imagine, a woman sleeping on the living room couch with no where to go if one of the men got aggressive. Though rare, there have been some instances of abuse.
HUD Rent Formula
According to the HUD funding formula, Aaron and his housemate spend up to 1/3 of their income on rent and according to a formula (which only God could understand) HUD picks up the rest. The formula considers if it is a distressed neighborhood, county (urban, rural) whether there is a washer/dryer, stove… in the house.
The house has to be HUD approved and meet specifications like have a front door that locks and screens on the windows….
Aaron’s portion of the rent comes from his HUD rent subsidy and his SSI.
SSI and SSDI
Social Security Income is a small monthly income given to people with disabilities. It depends on the person’s work history and employment and other factors (known only to God) but I think Aaron’s runs about $450 a month. Now, how anyone can live on $450 a month is also known only to God.
Social Security Disability Income is based on a person’s work history and other requirements. It can also be based on the parent’s eligability for SSI.
Amazingly, Aaron qualified for SSDI on his own. Which was good because as teachers, Tom and I didn’t have social security. (I think teachers now have to pay into social security, but they didn’t in the past.)
Work Study and Vocational Training
While Aaron was in Junior High and High School he participated in Work Study and summer, after-school work programs. He made a small wage plus learned great skills. He loaded pop machines, scraped gum off desks, watered flowers, cleaned windows, moved desks out of the classrooms for floor waxings, he folded towels, did laundry, picked up trash…. (He had a job coach with him.)
Because he had a disability at a young age, the number of quarters for eligibility were reduced. Every month I thank Aaron’s great high school teacher for making these jobs available. Aaron gets an extra hundred dollars (I think) a month for SSDI.
It took me 4 years to figure out how to get Aaron a Medicaid Waiver. Aaron was one of the first people to get one in the state of Ohio and the first in Butler County. Ohio did not have the waiver until many years after other states like Minnesota.
Medicaid was set up for people in nursing homes. The “Waiver” was designed so people like Aaron wouldn’t have to move into a nursing home–the money could follow them into their neighborhoods. At the time, it cost about $75,000 a year to keep Aaron in a nursing home or institution. It cost much less to be in his home community.
The Federal Government made a deal with the state of Ohio that they would pay 60% of the cost and the state would pick up 40%. Since the budget cuts, I think these formulas are changed and now the county board of developmental disabilities has to pick up most of these costs.
There are thousands of persons on the waiting lists for Medicaid Waivers. In my personal opinion, it is the strong nursing home industry lobby that is forcing Ohio to use most of its dollars for nursing homes and institutions, rather than the more economical community waivers.
If you are lucky enough to get a Medicaid waiver, you can transfer the money to another county in Ohio (if they approve it) but you CANNOT move out of state.
When we wanted to move to South Carolina or Tennessee to be closer to Aaron’s brother (his future guardian), we learned we would lose Aaron’s waiver and have to get on that state’s waiting list.
We filled out all the paperwork for Tennessee, met with a young social worker who was just married. Basically we were told the only way we could get a waiver in Tennessee was to drop Aaron off at a street corner and say he was homeless. The interesting part of this story is that we checked back with this social worker two years later to see where Aaron was on the waiting list. She pointed to a pile of papers in her office that went floor to ceiling and said, Aaron’s paperwork was somewhere in the pile. She also told us she was now divorced.
Aaron’s name on the waiting list, lasted longer than the marriage of the social worker. We gave up and sold our property in Tennessee.
Too Complicated? Questions? Ideas? Comments?
If you were a parent or had a family member with a disability where would you go? What would you do? Please share your thoughts.
Keep Climbing: Onward and Upward.
All my best, Mary
People First Controversy
There is controversy in the disability community about the use of People First or Person First language.
I’ve written several posts about People First language:
Some self-advocates on the Autism Spectrum disagree They feel parents want to deny “autistics” and “aspies” their unique voices. They say parents only want to destroy autism and cure their children.
I am proud to support Rosa’s Law and advocate for People First Language. Perhaps these personal stories will explain.
I’m going to start and end with “Wheelchair Becky” but also share some stories about the past history of people with disabilities, my son Aaron, myself, and my hope for the future.
Is People First Language important for “Wheelchair Becky”?
In a previous post: Building Community | Wheelchair Becky vs. Flat Stanley, I wrote about the way the Mattel Company thought “Wheelchair Becky” and “Black Barbie” would teach children about diversity and tolerance…and how it backfired.
I think People First language is part of the solution. If you disagree, that’s okay. It’s part of celebrating diversity.
Is People First language important for Aaron?
Aaron is my son’s name.
He has been depersonalized, reified and labeled by doctors, psychologists and other professionals as autistic, cerebral palsied, DD, MR, sensory deficit, movement disorder, severe/profound….
In the precedent setting Roncker case, the school psychologist testified under oath that Neill Roncker and others (like Aaron) had such low IQs “they wouldn’t know the difference between sitting next to a real person or sitting next to a rock.” So segregating them in separate schools with their own kind would make no difference. She considered their education a waste of school resources. Many people still agree with her.
So, I feel strongly People First language is important. Aaron is a person first. Others can give him labels. Some are medical and diagnostic but others are cultural: brother, son, uncle, cousin, friend, neighbor, patient, consumer, ….
This has nothing to do with wishing Aaron was cured. This is not denying the “autistic” culture. This has nothing to do with “disability pride.” It has everything to do with survival.
People First language reinforces the moral argument that people with severe disabilities are people and have a basic right to exist. A right to breathe, to be a member of the human race, to live with our families, go to neighborhood schools and community activities–rather than live in institutions.
Check out Parallels in Time history of people with disabilities It is filled with the abuse of those basic human rights. The more we know about our history, the more we understand the need to protect our rights to “life, liberty and the pursuit of happiness.” This is a daily challenge as we fight for caring staff, decent living conditions, health care, opportunities to be safe and belong to our families and communities. There are many people who see only the disability–and think that means we don’t need the same care and support–we are not really citizens, not really human.
Aaron is a “person” with wants, needs, likes and dislikes like everyone else. He is Aaron, that unique PERSON whom I love. He is Aaron a citizen with rights.
As I look at my life as a parent, advocate, teacher and friend to people with disabilities, I find I have excluded myself from my community. Yea, me–the advocate for inclusion.
Is Mary a Person First?
All mothers understand this conundrum. Especially when your child is so vulnerable. I’ve spent many years hanging around people working for the civil rights of people with disabilities i.e. Mothers of Special Children, Special Education Parent Groups, Arc, Autism National Committee, TASH…. I am a member of Disability World. Maybe not a primary consumer, but certainly a secondary consumer.
At some point, I realized I had to reclaim my own personhood. My personal resolution to rejoin the mainstream of my community included finding writers’ groups.
Fortunately, I found the Ohio Valley Romance Writers of America (OVRWA) in my community. These talented women have become more than mentors, they have become friends. I learned almost every one of them has a PEN Name, some have more than one.
Men with Pens
Men with Pens has also been a terrific community for beginning writers and bloggers. I’ve met James Chartrand who also wrote about using Pen Names and Pseudonyms.
Positive Solution: Writer’s Groups and Pen Names
So, it occurred to me: What if our stigmitized “Wheelchair Becky” started to include herself in these writing communities? After all, she’d graduated from the high school yearbook committee, right?
What if “Wheelchair Becky” chose her own Pen Name, became her own person, and like Flat Stanley started to integrate herself into the community?
Urban legend says one way to pick your Pen Name is to:
1. Write down the name of your first pet.
2. Write down the name of your street address when you
owned that pet.
I consulted with “Wheelchair Becky” and she agreed to make this into a community-building activity at the OVRWA holiday party.
Everyone wrote their pet’s name and put the papers in one red dish.
Everyone wrote their street address and put the papers into another dish.
Then “Wheelchair Becky” with the help of a friend, chose one name from each dish and VOILA—
Smokey Woods was born.
How do we build an Inclusive Community?
In the tradition of Flat Stanley and many writers, Smokey Woods began to make friends and include herself into the community. Here (at the head of the table) she is toasting in the New Year with our family. (BTW: She doesn’t eat much and is a cheap drunk.)
Here my precious granddaughter is playing with Smokey Woods the romance writer.
Smokey Woods is a doll, a toy. Smokey might use a wheelchair to get around, but she has a name.
My granddaughter represents the future. For Aaron, for me, for all people with disabilities. She will see people like Smokey in her classes and community. When she watches Glee on TV, she sees Artie singing and dancing. He also uses a wheelchair, but Artie has a name–and it doesn’t start with “wheelchair.”
Names matter. Aaron is Aaron. Mary is Mary.
I’m not promoting People First language because I am looking for a cure. I’m looking for survival and ways to prevent the abuse and segregation of the past. I’m looking for community inclusion.
For myself and my family.
For all the next generation of little kids who will be learning about diversity by playing with dolls and watching TV.
I also think Mark Twain, Dr. Seuss and all the other writers who use Pen Names would approve.
Keep Climbing: Onward and Upward
All my best,
Mary and Smokey
Did this make sense? Are there important reasons to use People First Language? Can we learn more about community inclusion and what it means to be a real person by looking at our language and the names we call each other? Do we need to study the past so we can move forward? In the comments please share your ideas.