Disabled Brothers Focus on Activism, Not Adversity

Do not cry for Mark and Blane Beckwith. They don’t want your pity.

The bearded brothers have never walked and now have trouble even breathing after lifetime struggles with muscular dystrophy. Both are over 40, defying by decades the life expectancy of many with the degenerative muscle disease.

On some mornings, Mark wakes up with blue lips for lack of oxygen; he jokes that it’s “a bad air day.” A cold can send him to the hospital.

The Beckwith brothers prefer to dwell on their abilities--to talk and laugh, to see and eat. Mark has a dog, Shadow, that goes for walks hooked to his wheelchair.

Lingering movement in a few fingers allows Mark to control his wheelchair’s tiny switches. Blane puffs into a tube to propel his chair, a technique that also lets him operate his computer using Morse code.

Nothing is more important to them than their independence--the freedom to surf the Internet late at night, to walk Shadow whenever they please, to befriend whomever they choose.

That’s why they became political activists, why they travel frequently to the state Capitol, to county and city halls to speak their minds, why they have risked and even welcomed arrest.

They are an unlikely pair fighting--with considerable success--for the rights of the disabled to live on their own.

“It is fascinating to me, when you look at the severity of their disabilities, and yet the information that they know and have been able to impart is phenomenal,” said Assemblywoman Dion Aroner, a Berkeley Democrat and advocate for the disabled. “They have been so effective because they are really experts on being disabled.”

In another time, perhaps even in another city, the Beckwith brothers would have been institutionalized. Instead, they share a small house in the Berkeley flats--planning central for their activism.

Blane, his graying hair streaming halfway down his back, once blocked Greyhound buses for three hours because they lacked wheelchair lifts. Mark stopped traffic by rolling up the center of a San Francisco street after a demonstration against a convention of nursing home operators.

“People say, ‘I’d rather die than be in a nursing home,’ ” Mark said. “Well, I would too, but being old or disabled doesn’t mean you have to be in a nursing home.”

Blane agreed: “We look upon that as incarceration.”

Last year, Mark helped found a grass-roots advocacy group called Agenda ‘98, which, as he puts it, “decided to fight for something good [in Sacramento] rather than just resisting the bad stuff.”

The group backed two statewide bills related to the kinds of attendants who make independent living possible for the Beckwiths. One bill passed and became law Jan. 1, bolstering a complicated process that helps the severely disabled afford enough care to stay in their own homes.

Meanwhile, Blane worked on a successful Berkeley ballot measure that increased property taxes to pay for emergency assistance, such as substitute attendants, for the disabled.

Life in the Beckwiths’ house is frenetic. Up to eight different attendants duck in and out around the clock. Each brother needs someone for several hours in the morning to get him up, bathed, dressed and fed; to put him into the body braces that keep him upright.

In the evening, each needs someone to reverse the process. Because both brothers are so active, they also need someone to come in the middle of the day, sometimes to drive them places in their van.

Care Is Cheaper Than Nursing Home

Talk of their needs always ends with this reminder: Although they rely on public dollars, the about $5,300 monthly cost of board and care for the two is less than average nursing home fees. They acknowledge too that Berkeley, birthplace of the independent living movement, is one of the few places in the nation where their lifestyle is possible.

New Mobility magazine recently rated Berkeley second only to Denver for people in wheelchairs because of an array of services ranging from emergency wheelchair repair to a registry matching the disabled with attendants.

Mark’s first taste of the power of protest came at a state college in Pennsylvania. Although the school had a disabled students program, there were no curb cuts to allow wheelchairs to roll up onto sidewalks. Mark called out the local television station, and the cuts were made.

In college, neither brother considered himself an activist. But they had been raised to believe in their potential.

Maybe it was because their mother, Betty, did not know that Blane had the genetic disease until she was already pregnant with Mark.

“Blane was a healthy, chubby boy,” she said. “We were worried when at 18 months he was still not walking, but they said it was because he was so chubby.”

Both boys were early talkers and learned to sit up, but then physical progress halted and reversed. Family photo albums show two grinning toddlers sitting next to each other on a blanket, then side by side in a double wheelchair.

Moving to San Francisco

In their rural hometown of Bear Lake, Pa., Betty and Donald Beckwith lobbied the school board to admit their bright boys to regular schools. The district superintendent, who had opposed their entrance, thought motorized wheelchairs would be dangerous in the hallways, so for most of their 12 years of school the brothers relied on friends to push them.

Even Betty was surprised when her sons started talking about going to college.

Yet off Mark went, and Blane, older but with poorer health, enrolled two years later. It was not long before Mark found himself listening intently to a paraplegic student’s wistful stories of his days in the Bay Area, during 1967’s Summer of Love.

Mark vowed to go west, and Blane resolved to follow.

“They were doing what they wanted to do,” said Betty Beckwith. “I didn’t dwell on being worried.”

Of course, there was plenty to worry a mother. Mark was accepted into UC Berkeley’s one-year transitional program for disabled students and in 1978 moved into a special cooperative dormitory. But he soon found himself distracted by the rigors of day-to-day living and left school.

“I found all this independence overwhelming: making all the plans, all the decisions,” he said.

In 1980, Blane headed west, and the brothers moved in together. When Blane landed in the hospital with pneumonia, Betty Beckwith came to visit and has rarely gone home since.

Mark completed a computer course for the disabled and has dabbled in some small business ventures. Rejected by the UC Berkeley program, Blane started at a community college, where he still takes mostly English classes to improve his writing.

Neither has achieved his original goal of finishing college, but by the mid-1980s both were consumed by a new passion: political activism.

They traveled to San Francisco on Labor Day in 1992 to protest at a convention of the American Health Care Assn., which represents 12,000 nursing homes. Word traveled through the crowd that Mark was among the 140 arrested. Blane responded, “Good!”

Then Blane got involved with a group called Jerry’s Orphans, which considers the Jerry Lewis Telethon insulting.

As part of a local outreach program, they visited a nursing home and spread the word that independence is possible. Two from their audience later moved out.

Along the way, they hooked up with disabled rights organizations, including ADAPT. That national group in 1990 reflected the movement’s change of emphasis by switching the name for which its acronym stands from American Disabled for Accessible Public Transportation to American Disabled for Attendant Programs Today.

In 1994, the Beckwith brothers helped start Alameda County’s first public authority for the disabled, which negotiated conditions under which attendants could unionize.

One of the group’s first successes was ensuring there would be no strikes. If attendants do not show up for work, they’re “leaving somebody lying in bed,” Mark says.

When state legislation was proposed to require fingerprinting of attendants to weed out felons, Mark traveled to Sacramento in the workers’ defense. That’s the business of the employer, not the state, he said, disclosing that the attendant who had driven him that day had been convicted of felony carjacking at the age of 18, but “he’s past that now.”

The bill was killed.

Legislation for Support Services

The legislation that prompted many of Mark’s half-a-dozen treks to Sacramento last year was AB 668, an in-home supportive services measure by Assemblywoman Aroner.

Sometimes Mark lobbied, sometimes he testified. Signed into law Sept. 27, the legislation expands a federal waiver program to allow the disabled and elderly to use their Medicaid funds as they see fit: hiring whomever they want, paying for an additional bedroom to house a live-in attendant, even offering someone a stipend to be on call around the clock.

Follow-up will consume much of Mark’s time this year--bird-dogging the regulations that determine who qualifies and a computer program to write checks for attendants.

He and Blane will work on Agenda ‘99--their second go-round on enacting statewide legislation. The first bill, introduced last month, would force the state to shoulder its share of attendant pay when a county raises wages above the $5.75-an-hour state limit.

But their biggest job will be to educate all the new legislators about the realities of their lives.

“With term limits, people just started to learn . . . and now they’re gone,” Mark said. “We have to get to these new guys before they get a lot of misinformation.”