Just hangin' with the guys

Calvin Keeney, RA of Gabriel House

Of the six Resident Assistants, Calvin Keeney, RA of Gabriel House, has been with Down Home Ranch the longest, having begun working as a Weekend RA in October of '08.

I'd always thought that Calvin had heard about the Ranch from his buddies at Mary Hardin Baylor who worked weekends, but I was wrong.

"Nope," he said.  "I'd gone to the campus career site a few times in the past year looking for a part-time job but I never found anything that interested me and probably hadn't looked on it in a year.  Then I had this really awful computer class that I just hated, and one of our assignments was to find something interesting on the campus career site.  So I went on and there was this thing about the Ranch, so I went on the web site and checked it out.

"Funny how I got the best job out of the worst class!"



Chris, Mark, Mike, Nick, Matt and Calvin of Gabriel House



Calvin was born and raised in the Temple area with brothers Michael John and Drew (Calvin's the middle) and parents Charlotte and Mike.  He played tennis and basketball at Lorena High, where he graduated in 2005.  I knew he was an art major in college and asked him if he'd done much art in high school.

"Not really," he said.  "I was too busy with sports, but when I got to college there was time to really get into it.  I didn't have a lot of background, but I started out with painting and really liked it, and by the time I graduated I was into ceramics in a big way."

I complimented Calvin on the cleanliness and neatness of the home and he said, "Oh, it's totally the guys who keep it this way."

Sweet words to my ear!  I know this modesty for what it doesn't say: that Calvin must be a natural organizer and delegator with high standards for his home.  I asked him what he liked best about being an RA and he was quick to say, "The companionship of the guys!  They're great, and funny, and we're just like a bunch of freshmen that got free of the family home, making our way in the world."

The greatest challenge?  Diet and exercise for the guys.  Well, join the crowd, I say.

Calvin agreed that the recent Ranch cruise was the best ever.  Staff and Ranchers alike seemed to have a great time.  He said, "It's so great seeing the Ranchers living the dream."

One day on the cruise I was sitting in a corner of the library reading, having noticed Calvin in a bridge game in another area.  When the foursome broke for a few minutes, one of the players came over to me.  I figured Calvin had been talking about the Ranch, but I had a surprise coming.  The lady was an early supporter of Down Home Ranch, back in the days when we had nothing but a greenhouse, a barn, and a little mobile home.  She was delighted to see the results of her investment.

Calvin is well into his second year as a full-time RA, and it's a great fit with Gabriel House.  He noted that one of the best things to happen recently was Nick moving to Gabriel from Joseph House.

"Nick and Chris," he said, "boy, those are a pair!  Chris hasn't had a real close friend in the house but he and Nick hit it off right away.  They have all these in-jokes and things they ask each other that set them and everybody else laughing.  Most of the time I don't understand them and when I do, well, sometimes they're not the most polite things to say but I have to laugh anyway."

Calvin enjoys the other staff, and he, Tom, Lori, and Zach joined the gym at the YMCA in Taylor and go there to work out two or three times a week.  Besides bridge Calvin enjoys other games of strategy and looks forward to going to a national gaming conference with his parents and brothers in Indianapolis this summer.

In the future Calvin would like to use his art degree to help the Ranch get its ceramics business off the ground.  We closed with a date to go over to the Spur and inspect the molds and kilns donated to the Ranch.

From the high...whoops!...seas

Swells today "near gale" they say, but actually it doesn't feel so bad, except it's a little disconcerting to put your foot down and find the floor is not where you expected it to be
But no matter, our gang is well and having a BLAST!  Tomorrow all the pics will go up and you can see for yourself, but for now you just have to take my word for it.

We have schmoozed with dolphins, deep-sea fished, lain on the beach, swum in the ocean, gone down in submarines, ziplined, won hairy man contests, and danced til our toes were nubs.  We are the party people on board and off.

As we were going through customs a Carnival employee approached me quietly and asked how she could find out what employment opportunities were available at the Ranch.  I told her how to go onto the web site and she said..."I want what you all have!"

Yesterday a man working the food service at the beach told Maria, "you are all like a family how you all care for each other."  Excuse me for thinking I might have died and gone to heaven!

Lofty expressions, equally lofty ideals.

Plus...our Jason won the hairy man contest!  Ranch life as usual, ranging from the sublime to the ridiculous!

But what am I doing sitting here at the internet cafe kiosk?!  I need to get with the program.  Somewhere, there's dancing going on!

It always grows back

A few weeks ago I popped into a hair-cutting establishment for a trim.  I go to the same place each time but take luck of the draw as to who wields the scissors, which is a remarkable statement of faith, now that I think about it. 

But what the heck, I figure.  It always grows back.

This time an alarmingly extroverted young woman took me in hand.  I told her what I wanted and she set to her work, chattering all the while about this, that, and the other thing.
And then the bomb, "I just couldn't believe how RETARDED I was!"

"Whoa there, babe!" I interjected immediately, holding up my hand.  The scissors froze in mid-air.
"I have a daughter with Down syndrome," I went on, "and she's a wonderful young woman and the light of my life.  Please don't use that word in that way."

She looked predictably mortified.  "I didn't mean anything bad about it," she said.  "It's just something people say."

"I know you say it without thinking," I said, "but it hurts to hear it because it dismisses any value a person like my daughter might have.  I just wanted you to know that."

She resumed clipping my hair and I trusted her professionalism would trump any desire to scalp me.  I was right, and she finished the cut very seriously and carefully, if silently.

I've noticed that another word thrown about casually and pejoratively today among the young is "gay."  It's Oh, that's so GAY and Oh, he's so GAY. 

I just read the New Yorker article on the young violinist from Rutgers, Tyler Clementi, who committed suicide early in his freshman year after his assigned college roommate posted innumerable insulting and silly comments on various social networking sites about his being gay even before they met each other, and continued after they moved into the dorm room together.  

Yes, Tyler was gay.  He had just come out to his family and he didn't hide it at school.  But that was incidental to the way his tormenter used the word, which was to emphasize that, well, Tyler just didn't count, he was less than a nothing, not even a zero in the human equation.
Two lives--one gone, one ruined, however the trial turns out.

I didn't get on the bandwagon a few years ago to ban the "R" word. We pretty much need a term that describes what we're talking about when we discuss issues that affect people with intellectual disabilities, or as we used to say, mental retardation (which was itself quite an improvement over the terms "moron," "imbecile," and "idiot" used as clinical terms in their day.)

And there is no need to discuss retiring the word "gay."   Unlike people with intellectual disabilities, gay men are quite capable of determining what term to use to describe themselves. 
But what happened to Tyler, and what happens daily to people with IDDs, is absolutely the same.

These labels are used to push people out beyond the human fold, to strip them of their dignity as God's own beloved children, to shun them and set them apart.  All of us have a deep, inborn fear of being rejected.  We know in our hearts that our very lives depend upon being accepted, loved, and counted in the fellowship of others.

Unfortunately, although we banned the "R" word from human speech, I suspect it won't be long before we hear the mindless taunt of, "Oh that's soooo IDD!"  Because it always grows back.

So instead of banning these terms, let's ban the attitudes that lie behind their intent to hurt, to dismiss, to characterize a fellow human being as someone undeserving of the basic respect we must accord all human beings.

Please.  Speak up, and speak your heart.

A visit from the Commish

Jerry, Commissioner Traylor, and Kelly

Commissioner Chris Traylor, head of the Department of Aging and Disability Services, which provides licensure and oversight of Down Home Ranch, visited today.  We were honored and proud to show "the Commish" around, and have him meet our high-spirited band of Ranchers, all of whom were busy at their jobs gardening, cooking, cleaning, and tending the animals.

When we first started Down Home Ranch, we were determined never to accept any public money.  We wanted desperately to remain independent, free from needless restraints and cumbersome bureaucratic entanglements.

But...once we began the residential program, we hit a wall.  We just could not raise enough money to pay for the cost of caring for people with major intellectual disabilities, and our families could not afford to pay the amounts needed to support their Rancher throughout their entire lives.

On more than one occasion, we were contacted by other private pay facilities, who were having to discharge a resident (who in one case had lived there for over 20 years) because their trust funds had given out, or their dads had retired.  How much of a heartbreak would that be!?

Jer and I were comfortably middle-class when we decided to sail into the unknown waters of building a ranch for people with disabilities, but we didn't know any people of great wealth.  We built the Ranch over a long period of time, paying as we went.

Rebekah and Brian tend plants in front of the Pavilion

But maintaining a residential program is an all-or-nothing deal.  When you're building a barn, you can build part of it and then take a break while you gather the resources to finish it.  That doesn't work so well with people, and although we as a family had gone through very precarious times in building the Ranch, there was no way we'd put our Ranchers through anything like that.  We needed a stable source of funding.

One thing led to another, and we decided it would be a good idea for the Ranch, and a tremendous help for our struggling families, to seek certification as providers for some of the programs funded through Medicaid for people with intellectual disabilities.

I was the program director in those days, and had to wend my way through the truly daunting obstacles of qualifying for that certification.  One of my tasks was to write policies and procedures based on innumerable rules, statues, regulations, and "tags" that spell out exactly and precisely how and why to do everything under the sun related to caring for a person with a disability.

To my surprise, I found no egregious or unreasonable dictates therein.  "It's all there, every bit of it, for very good reasons," I told Jerry.

At first there was a bit of resistance on the part of advocates and regulators.  They were suspicious of why we would decide to plop ourselves out in the middle of nowhere.  The trend was totally the other way--apartments and single homes for one or two folks at most.  Why did we want to be in the country, all living together?

Well, suffice it to say that it comes down to different strokes for different folks.  Some people like the country, the animals, the friends nearby.  We strove for that old-fashioned neighborhood, where a helping hand is never far away, and by gum, we think we've got it!

We promised to work hard to be the best providers--privately or publically funded--in the state of Texas, and  DADS has come to appreciate that we mean to do exactly that, providing technical help and support along the way.

Did becoming dependent on public support solve all of our financial problems?  Absolutely not.  At most it's a good base from which to start.  The money we receive from the state covers the basics--housing, utilities, food, supervision.  But income from charitable donations and enterprises make the real difference in the quality of life for our Ranchers--travel, lots of off-Ranch activities, superior day program and excellent staff.  Together we can offer terrific opportunities for our residents, and they don't have to come from wealthy families to live here.

When the Commissioner showed up today, we were eager to show him the Ranch and our community up close and personal.  He was warmly greeted by confident, cheerful staff and Ranchers, and we hope he agrees that our partnership with DADS has paid off well all around.

And we thank him for his work, and his caring, for those we all serve.

Last night

The Village at Twilight

This week was a hard week.

Our cook quit abruptly a few weeks ago, and we figured out that our Pavilion kitchen had been suffering from...shall we say, a lack of stewardship...for some time, so I'm handling all the food ordering, shopping, menu creating, and consequent flack-catching for the Ranch for the next several weeks. 

Marci has mostly been wrangling the kitchen crew, and I've been trying to use up inventory (what, cod again!?) prior to getting things under a little more coherent management.

The work is hard--not just for a 70-year old, but for anybody--and the days are long!  Most nights I go to bed with a sore back and wake up long before dawn.  We're talking 13-hour days here.

Yesterday was particularly tough, since we had to get ready for a retreat group coming in, and the Ranchers were going to go to Special Olympics swimming competitions today, so I stayed late making sandwiches and getting the lunch ready for the Saturday outing.

Then I mopped the floor six times in a row until I could finally get semi-clear rinse water.  The San Jose people showed up, and Jerry and I raced around getting the lights on and such.

People often say to me, "Oh my gosh, you must have such a sense of pride and fulfillment whenever you look around this place."

The truth is just the opposite.

Wherever I look I see things that need fixing, watering, painting, finishing, cleaning...

It reminds me of funeral services I've attended for children with special needs, and I've attended more than a few.

The moms stand brokenhearted before the assembly and confess that they never, ever, not for one day, felt they ever did enough for their child with disabilities.

However much they did, and they performed heroic feats, year after year, after year...still, they were always exhorting themselves to do more.  Surely one more half hour of speech therapy per week, one more enrichment class, one more hour of homework supervision and help would make all the difference in their child's life.

But after all was said and done, the kid still had Down syndrome, and given basically decent parenting, one turned out much like another.

Which is a good thing.

Because recent studies indicate that families with children with Down syndrome are among the happiest familiest around--even laying the disability issue aside.  That's because our kids are generally fun-loving and emotionally generous (to put it mildly).

And what do they NOT do?  Well, when they consider the world, they tend not to fixate on what needs fixing, cleaning, watering, or finishing.  They take the world on its own terms and, when in doubt, have a party!

None of which has anything to do with what happened last night, which was that Jerry and I, tearing around fixing this and adjusting that, stopped for a breathtaking moment and looked around the Ranch and really saw it the way it deserves to be seen.

The sun was well below the horizon.  The sky was a dusk rose in the west, and the barn caught the last rays of light.

The lanterns had come on, and the yellow light shone from the houses in the Village.

The Pavilion shone forth, and inside we could see the young Hispanic adults on retreat assembled in fellowship.

And I had a deep, welcome sense for just a few minutes that all the striving, all the worry, all the endless toil over the past 20 years has been worth it after all.

It was a blessed moment, and I know it will soon pass, but it lingers with me today.

And I am grateful beyond measure.

Oh, California!

Kelly, Alaina and I are back at the Ranch, tuckered out from the great California adventure.

Alaina and Kelly at entrance to Disneyland

We spent Wednesday at Disneyland, which is just a few miles from my cousin's lair in Laguna Woods.  Cousin Melanie served as tour guide and inside dopester for the day. 

Once there, we faced a typical dilemma: which park to go to, Disneyland or Adventureland?  The girls don't like wild rides, but they are very concious of being adults, and I was afraid they would disdain the fairy tale and princess cultures of the old park.

Our kind of ride

Not to worry!  The huge carousel was a hit, and they even stood in line for Dumbo, although they didn't use the joy stick for most of the ride.  I suspect Kelly, who hates heights, was the reason for that.  At one point, though, Alaina grabbed it and up we went.  Unfortunately I wasn't fast enough to catch the look on Kelly's face.

The day was warm, but not hot, and the crowd was small.  Waiting was minimal for the rides.  The main attraction, however, was Main Street--getting pictures taken with characters, eating ice cream, and shopping for the boy friends.

We had dinner reservations at the Catal Spanish restaurant, a "Disney-dining experience" I'd made reservations for the day before, so about 5:00 we availed ourselves of the restrooms in City Hall as we made ready to go eat.

Signing in the plaza

While inside we heard the sounds of a band playing.  Coming out we saw that a flag ceremony had begun in the Main Street Plaza.  Hey, if there's music, we party, so over we went.

A barbershop quartet was singing God Bless America.  Kelly and Alaina stood to the side and began signing the words, very intently and seriously.  The color guard approached and began taking down the flag and all were invited to join in singing the national anthem.

Eyes were equally on the proceedings and on the girls as they signed along, and not a few welled up with tears as true patriotism overrode the staginess of the event.  This was easily the high point of our delightful day at Disneyland.

Ensconced at Catal and the sole focus of the extensive wait staff, we relaxed with cool drinks and pondered the menu.  Pat, Melanie and I went for the paella, but the girls are not so adventurous, so the waiter deftly worked with them to identify a dish they'd enjoy.  I tried not to think about the fact that they'd had been as happy with a $10 hamburger as their $30 entrees.

Said paellas were outrageously good, worth every penny.

After dinner we strolled around listening to street musicians, and the girls were captivated by Drew Tretick, from whom we each bought an album.

Loved it and had to have it

Thursday was more laid back.  Cousins Sherri and Steve had us over to their place for pizza.  The girls lounged in the hot tub and pool as the sun went down.  We ate pizza and laughed over old times and  family adventures in the good old days.  (Melanie says I was her "Auntie Mame.")

Alaina relaxes in the pool

Friday morning we were out the door by 5:20 AM to catch our plane. I'd caught on by now to request pre-boarding so I could be sure to sit with the girls.  When the skies got rough a few hundred miles from Austin and we were rocking and rolling Kelly got scared.

Alaina leaned over toward her and stroked her arm.  "It's all right, Kelly," she said. "Jesus will take care of us."

Kelly replied, "Yes, he will and everything will be all right."

And I wasn't needed at all.

When we got back to the Ranch Kyle and Sterling were waiting.  Sterling came tearing up to Martha House on his bike to help carry luggage into the house.  He and Kelly shared a shy kiss and she gave him his present. 

"See you at the Pavilion!" he cried, and headed back up the road hooting and hollering like Tarzan.  Jerry and I laughed.  Kelly and Alaina got up to the Pavilion to rejoin their friends and things were back to normal at Down Home Ranch.

Day 2: A Day at Sea

Well, we got settled into our cabins.  This year the luggage arrived quickly at our cabins, so we did not have to spend arrival day explaining where it was.  The Ranchers do not like to be separated from their possessions!

Unfortunately, I was not assigned seating with our main group, who were far away in another section of the dining room.  Poor Ashley was assigned a different time and a completely different dining room, and no amount of cajoling or explaining that she was responsible for four handicapped ladies resulted in any changes.  Fortunately, at least one member of our assigned table failed to show up each sitting, so she camped out against the rules, causing a bit of consernation to the staff, but not enough to get us ejected from the dining room!



Dancing on the Deck

In the morning I hung out with Kelly and Sterling, and a spontaneous dance party broke out on the stage of the Lido deck. 

Julia, Suzanne, and Brent take a whirl

Chris dances with mom, Heidi

Cruise to Cozumel Day 1

Brent & Michael at the
cruise terminal in Galveston

Yesterday we boarded the Carnival Ecstasy for our annual cruise to Cozumel.  The Ranchers have been suffering mightily all week for the day to arrive, and left the Ranch in the bus, and on time, ready for the four-hour trip to Galveston.

I rode with Genie, our board president, who picked me up in Austin and we arrived about an hour later than our crew.  Genie dropped me off in front of the cruise terminal to go park while I dealt with our luggage.  I thought our crew was probably already inside the terminal standing in various lines but suddenly I heard an ecstatic, "Look, there's Judy!" and saw a mob running toward me.

Mark, Sterling, Kyle and Kelly rushed up and threw their arms around me, nearly knocking me to the sidewalk.  Bystanders might have thought I was their grandmother who had been held as a prisoner in Siberia for the past ten years, instead of having been with them at the Ranch less than 24 hours before!  (This happens when they spy me shopping in Wal-Mart also.)

Our group consists of 66 souls this year--Ranchers, staff, families, friends of families.  It's a great rollicking bunch.

Once inside the terminal, we stood for the next hour in snaking lines that doubled back and forth, and the Ranchers made great sport of seeing one another, then not, then seeing one another again.  While watching other people shuffle along, seemingly just enduring this part of the journey, I marveled at how much fun we were already having. 

It really is all a matter of attitude.

Finally we made it onto the ship, and lunch on the Lido deck was tops on everyone's agenda.  It was almost two and we were famished.  Despite gentle reminders that we were to eat again in just a few hours, the Ranchers fell upon the pizza counter with undisguised glee and very little restraint.

The seas are calm, the skies are clear, and it grows warmer by the mile.  Tomorrow we'll hit the beach in Cozumel, and I'll tell you all about that.

The Campers Are Here!

The campers are here! The cars came rolling in starting around 3:30 Sunday afternoon. Our staff and friends saddled up to greet the families and entertain them while waiting for the gates to open wide and the wild rumpus begin!

Week 1 is for teenagers and very young adults. It was great fun to see friends who haven’t seen each other in a year fall into each other’s arms.

Despite some rainy days, the fun continues unabated. Every camp director worth his or her salt knows a zillion ways to keep campers entertained indoors, and Denise and her formidable crew of counselors are no exception. Skits, karaoke, line dancing, crafts, games, sharing tables—not to mention mealtimes—are all popular pastimes.

Today, though cloudy, is basically dry, and campers had fun working with the mini horses and donkeys--the ones with four legs, not the stick ones in the dining room used for Western skits!

Tomorrow, incredibly, is their last full day. I say incredibly because camp did not flow so quickly when Miss Gay and I were the ones running it day after day. In fact, we always told the staff to expect Monday to last approximately 72 hours, after which things would move briskly by. Nurse Linda confirmed that yes, Monday was a long one.

Tomorrow evening Ranchers will join campers for the Dance. Oh, how everyone loves the Dance! If you’re ever in the neighborhood drop by. We guarantee you’ll have a great time.

One reason is, you’re required to!

We tolerate NO wallflowers among the staff. Everyone must dance, and everyone discovers that even if they didn’t feel like dancing, glory be—they’re having a great time and now you do.

And when’s the last time you danced to our all-time favorite: Y-M-C-A?

Only nine weeks to go, and lots more tales to tell.

Rebekah's Smile II

Well, I promised Rebekah I'd put a tune to "Rebekah's Smile," the poem I wrote her last year for her 25th birthday.  You might recall she asked me about it after Kelly and I sang to her on her 26th birthday.

But I couldn't come up with a tune, and then Rebekah's dad, Fr. John, told me that some of his parishioners at St. Francis, Janie Stein and Martin Bates, were working on putting the poem to music, so I desisted my efforts to see what came of theirs.

A few Sundays ago they were ready to debut the song, so I trundled over to College Station for the morning service, which was delightful.  (If you ever have a chance to hear Fr. John preach on the gospel according to Charlotte's Web, don't miss it!)

After the service and before falling upon the Second Sunday potluck, Janie and the choir passed out copies of the words to Rebekah's Smile.  Rebekah stood, smiling of course, as they began.

Soon there wasn't a dry eye in the crowd.  By the end of the song, Rebekah had been overcome herself and burst into tears, but they were happy tears and Mom Rita and sister Sarah quickly set things right.

This was Janie and Martin's last Sunday at St. Francis, so the congregation wrapped them in a beautiful woven prayer shawl to comfort and protect them as they make their way to Colorado, where they will visit their kids and love on their grandkids for a few months.

I got the music from Janie for the song, and Rebekah's been asking me to sing it for everybody at the Ranch, which I will do soon.

In the meantime, just in case you're interested, here are the words of the song:

                            Rebekah's Smile

Rebekah's smile lights up the world and seems to say,
That everything that worries you will be okay.
Today her laughter fills the sky with happy song,
And if the storm clouds come, it's not for long.

            Rebekah's smile, I wouldn't trade it for the world,
           Not for diamonds, not for gold, or even pearls.
           It breaks like dawn that comes after the night,
           A blessing setting every trouble somehow right.

She runs to throw her arms around you, glad you're there.
Though other people now and then will stop and stare.
I don't know just what they're thinking when they see
How love can be so simple and so free.

          Rebekah's smile, I wouldn't trade it for the world,
          Not for diamonds, not for gold, or even pearls.
          It breaks like dawn that comes after the night,
         A blessing setting every trouble somehow right

You know, the world could learn a thing or two,
From gentle souls who only care that you are you.
You might never win a prize, or make a fortune big or small,
But if you're Rebekah's friend, you've got it all.

Going to Hell in a Wheelbarrow

“The world is going to hell in a wheelbarrow, and this is not going to do retarded people any good.” Dr. Wolf Wolfensberger, Mental Retardation, February 1994.

I was skimming the current (April 2010) issue of Intellectual and Development al Disabilities: A Journal of Policy, Practices, and Perspectives, the official publication of the American Association on Intellectual and Developmental Disabilities.


Whew! OK, one skims People Magazine. I was doing something else with the Journal.

In any case, when I came to the end of it I saw that Wolf Wolfensberger had a lengthy piece, “How to Comport Ourselves in an Era of Shrinking Resources.” I began reading and promptly felt like I’d been caught in the updraft of an F-6 tornado.

I’ve always admired and respected Wolfensberger. He’s an old-timer on the disability scene, long established by the time our daughter Kelly was born 25 years ago. He pioneered much of the early work examining society’s attitude toward people devalued because of their disabilities, and was one of a handful of people whose work and writings inspired us to build Down Home Ranch.

This current piece qualifies as a true Jeremiad, in the classic meaning of that term. It’s an unflinching analysis of social and economic trends, and of their implications for the lives of traditionally devalued members of society—those who are aged and/or ill, those with mental illness and intellectual disabilities, those who for whatever reason are economically unproductive. It is a prophecy of things to come.

Boiled way down, Wolfensberger’s conclusions are as follows:

1. Our national and world economies are fundamentally unhinged from reality-based principles that would ensure sustainability, with the result that they are in free-fall now and will continue to deteriorate until sane policies are restored;

2. In the historically “wealthy nations” birth rates have fallen so low that the proportion of working people necessary to fund social services, pensions, and other social obligations has fallen to unsustainable levels;

3. In part because of 2, above, social changes in the “wealthy nations” have been trending for decades toward a culture of “death-making,” i.e. solving the problem of the economic drain of unproductive citizens by preventing their birth through abortion (90% in the case of Down syndrome) or hastening their death through euthanasia (soon to be a favored option for us old folks);

4. The implementation of the theories and policies of academic institutions, advocates, and regulatory agencies have been more successful in ensuring the non-productivity of persons with disabilities rather than increasing opportunities for them to be productive;

5. Misuse of the tools of advocacy has led to absurdities in the funding of everything from cancer research to supports for adults with intellectual disabilities, resulting in enormous and indefensible disparities;

6. Traditional family values of thrift, sacrifice, faith, and self-reliance have caved before a culture that encourages debt, obsession with self, and pursuit of materialism;

7. In part because of 5, above, government agencies have assumed ever greater responsibility for meeting needs previously met by families, at far greater cost and with much less efficiency.

Wolfensberger then spells out his proposed remedies, at least insofar as ensuring that some decent level of care survives for people with disabilities. He is clearly not optimistic. He’s been through this before, in 1994, and was branded a lunatic at the time.

However, pretty much everything he predicted 16 years ago has come true, with startling (and depressing) accuracy. His voice resonates with me because I recall in 1984 gently rocking baby Kelly in the autumn sunlight that streamed through the window of the living room of our home in Austin, thinking about…demographics.

I knew where things were headed. That’s another reason we built the Ranch.

Warning: this piece is an equal-opportunity offender. No matter where you place yourself on the political spectrum, you are likely to feel skewered at some point or another.

But if you care about our people I strongly encourage you to read it carefully, think about it deeply, and share it with others.

Because our ability to protect the ones we love will depend on how we respond.

Selena Mania!

In March I chanced to read an article in the Texas Monthly commemorating the 15th anniversary of  the death of Mexican-American singer Selena.  I did remember when she was killed, but had seen her at the time as a minor pop singer in whom mostly young people would be interested.

Needless to say, the article was heartbreaking, but more than that, it piqued my interest anew.

A few days later I took Sterling and Kelly to Wal-Mart, and chanced to pass by the rack featuring Spanish music.  There was a double album of Selena's hits and it wasn't expensive, so I bought it.

Wow!  I fell in love on the first song.  What a voice! What presence! What sureness! What musicianship!  I was hooked.  Soon Selena was booming on my car speakers wherever I went, and the joy of listening to her irrepresible renditions filled my days.

Kelly and Sterling liked it, too.  I told them about Selena and reminded them we had a movie about her in the library, but warned that it ended very sadly.

Kelly watched the movie that night, and asked me lots of questions the next day.  We've played the songs and talked a lot more about things I imagine a lot of people would really like to know: Why did that woman shoot Selena?  Is Selena in heaven now?  How old would she be now?  Is her husband still sad?

The answers I gave her?  "We'll never really know."  "I'm certain she is."  "38 years old."  "Yes, I'm sure he is, but he got married again, and guess what--he has a little boy with Down syndrome just like you!"

Then about two weeks ago I came out of my office and what do I hear but "...'Amor prohibido murmuran por las calles'..."  Selena!

"Who's playing Selena?" I ask.

"Me," says Natalie, "I love her."

Now all the Ranchers can talk about is Selena.  DVD sales are booming, Ranchers are clamoring for me to teach them her songs in Spanish.  We sing, we dance, we boogie to Selena.

Often the Ranchers want to talk about the unbelievable tragedy of her death and our hearts break anew.  How is it even possible that so much aliveness could be taken away? 

But I remind them that the light shines in the darkness, and the darkness will never overcome it.

And we best honor Selena by holding onto that, and by joyfully letting the gifts she left behind fill our lives.



Photo:  Selena, pictured in April 1994, for her Amor Prohibido Tour

Back to Real Life

We’re back from our cruise on the Carnival Ecstasy to Cozumel and back! Had a great time, but now are having to get used to making our own beds, cooking our own food, and running our own karaoke machine again. Bummer!

Everyone, staff or Rancher, has a special memory of this year’s trip—Kyle dedicating a song to Alaina on the karaoke stage and then sweetly singing it, or our three decidedly non-hirsute contenders in the Hairy Man Contest (who were the crowd faves anyway).

For me, same as last year and the year before that, I carry away the memory of the unfailing graciousness and helpfulness of the on-board staff and crew.

Yes, I know they’re chosen, hired, trained, and paid to be accommodating. But really, who in the hospitality business isn’t? I’m still impressed.

We’re a high-maintenance group overall, with picky eaters, endless financial matters to negotiate, lost key cards and other little setbacks. And we’re not big spenders. Cruise lines depend on on-board sales to make a profit, and would go broke in a flash if they relied on the likes of us to buy enough jewelry and drink enough liquor to keep the fleet afloat.

Yet we were (and always have been) genuinely and happily treated like royalty by everyone, from the bursar’s office staff to the cabin stewards.

I noticed an article titled “Treat Your Family Like a Customer” in a business magazine shortly before leaving on the cruise and immediately thought “not!” But now I wonder: What would happen if we treated not just family but everyone the way we were treated by the Carnival staff?

Would the world be a better place or a worse place?

If nothing else, I think it’s fair to say at least some of the crew we met on-board weren’t feeling quite up to par, or were preoccupied with some worry, or were just plumb mystified by some of the behavior they had to witness or deal with.

Most of them spend nine consecutive months a year away from their homes and families caring for strangers on a large floating hotel. A lot of people could work up a pretty good grudge over that, I imagine.

That’s why I insist on the “recommended” gratuity (at a minimum) due each Carnival employee be paid by each person representing Down Home Ranch.

Not only do they rely on it, they more than deserve it for showing the rest of us how to make the world a better place.

So congratulations, and thank you to Carnival Cruise Lines, and all who work aboard the good ship Ecstasy.

You made our dreams come true.

Again.

Day on the Beach

Well, we all survived our first day at sea, and none of the residents got seasick, though a few staff members did.  Woke up this morning with the ship docking at Cozumel, and off we went for our day on the beach.

Weather perfect: mid 80s, clear skies, gentle breeze.

We arrived at the beautiful beach about 10:30 and spent half an hour and about $234 in sunscreen getting ready for our exciting day.  Mostly exciting for the staff, trying to track 17 souls heading off in various directions, some of which included deep water.

Casey and Marci, our fearless lifeguards, were stationed at the ready.  Sandy made sure everyone who wanted to go out on a kayak or a paddleboat got to do so.  John and the guys jumped happily upon the floating trampoline.  All in the azure waters of the Caribbean in this locale.

Several elected to get fake tatoos, pictures with large macaws and godzilla-like lizards.

Back at the dining room, glowing pink and dressed in our cowboy finery, we definitely made the most noise in honor of our wait staff.  We do NOT lack for enthusiasm.

The Ranchers are mostly off for karaoke followed by the deck party dance afterwards.  I am ready for bed.  I plan to get up at 1:00 AM to see the full moon over the Caribbean. 

Maybe, anyway.

Tomorrow we hold our own Sunday service in the Neon Bar.  Should be interesting.  Hasta manana y que suenen con los angelitos!

From the High Seas

Well, we made it onto the ship Ecstasy.  The trip here was smooth and uneventful, which is the way we like it.  Getting through all the embarkation stations at the pier however was something else.

Casey the wonder case manager, however, saved the day. 

She'd made a binder to hold everyone's paperwork and passports that now weighs in at about 22 pounds.  After she checked in our gang the man she'd been working with almost went overboard (a real possibility considering where we were) with praise for our gal. 

It's nice to meet someone with true appreciation of the potential of a smart woman in possession of an industrial-grade paper punch!

Didn't have to do the dreaded flotation device drill.  Instead we sat in the lounge and were instructed what to do in case of an emergency.  The message I think we came away with was, show up in the Starlight Lounge with a stiff drink and paper umbrellas in your hair.  It could be worse, I guess.

There was a fair amount of stress concerning the delivery of the luggage, but only because our people really dislike being separated from their belongings.  Really dislike it.  Finally it all showed up and got properly stowed away.

And the wild rumpus began.

Stay tuned.

I'm Too Old For This!

Good grief!  Casey, Denise, and I have spent all day getting ready for the cruise.  We leave tomorrow.

The Ranchers are zinging off the walls.  Their bags are packed (yes, we used a list). Medical records are stashed, passports checked and double-checked, snacks bought for the trip to Galveston, the vehicles cleaned and gassed and safety-checked, the bus driver hired, and a zillion other details seen to.

On top of the whirlwind of activity we were engaged in today, a local energy company was working right in the heart of things replacing gigantic wooden utility posts and lines with monstrous concrete posts that look like something out of the War of the Worlds. 

Chief the paint gelding got so spooked by the machines and commotion he broke out of his stall and the paddock and gave Don and Lori an exciting chase around the Ranch.

A family had stopped by to do a self-tour of the Ranch with their young son, who has Down syndrome, and seemed gratified by the wild west scenario unfolding before them.

"As advertised," said I, with a wan smile.

And now I tumble into bed, exhausted, but looking forward to warm temperatures and soft beds as we make our way south.  We ask your prayers for calm seas and happy tummies on our way.

I'll keep you posted from the ship.