Desiree Pilgrim-Hunter, a local activist who is running for state senate in the Bronx 33rd District, doesn’t want to be known for her disability — a back injury stemming from a birth defect in her spine that has caused her a tremendous amount of pain throughout her adult life.

But last week, she found herself defending her integrity when a blog post questioned how she could possibly run for office and be a hard-working senator while, at the same time, receiving disability benefits that define her as someone who is incapable of working. (For the record, Pilgrim-Hunter says she will drop the benefits immediately if she wins and assumes office.)

The BoogieDowner, a local blog based in Bedford Park, wrote: “This is the height of contradiction; on the one hand Ms. Pilgrim-Hunter is attempting to convince the voters of the 33rd district that she is able and capable of working hard for them in the state senate, but on the other hand, she has convinced the federal government that she is incapable of working (and she continually confirms this incapacity to work when she cashes her disability check every month).”

The post ignited a firestorm of comments both defending and disparaging Pilgrim-Hunter for running for office while receiving disability benefits. (One called her “yet another scam artist”; another writes in her defense, “A sanctimonius [sic] lot…all of you…at least she has the heart and guts to run for office.” Read all the comments here.)

Pilgrim-Hunter is one of four candidates challenging Pedro Espada, Jr. for the right to represent the 33rd Senate District. None of her fellow challengers — Gustavo Rivera, Fernando Tirado or Daniel Padernacht — or Espada, have criticized Pilgrim-Hunter. Still, it remains a valid question.

The simple answer is that Pilgrim-Hunter has a legal right to seek office or any other job that she believes she can do while managing her disability. Some even say she should be celebrated for her efforts. Still, questions about whether she can do the job or should do the job remain for voters in the district.

If nothing else, the story of Pilgrim-Hunter’s disability speaks volumes about the person she is today and the candidate she has become.

The Word From Social Security

Jane Zanca at the New York office of the Social Security Administration, said she couldn’t speak about Pilgrim-Hunter specifically. But she did say that someone like Pilgrim-Hunter, who is receiving disability benefits, is doing nothing illegal by running for office.

To determine whether someone is eligible for disability benefits, the person must undergo extensive medical evaluation and a series of hearings. Pilgrim-Hunter says that process took six years for her and that it resulted in a determination that she was unable to work and eligible for disability payments. Zanca said the state encourages disability recipients to go back to work and has a variety of programs to help them do that.

Legally, she could keep her benefits while "testing" out any job, including elected office, for nine months while continuing to receive benefits. But, in a phone interview on Wednesday, Pilgrim-Hunter said being a state senator is "not something you test out" and that she has committed to rescinding her benefits immediately upon assuming office

Zanca said there are multiple ways that disability recipients can get back into the work force. Maybe their condition has improved or perhaps they’ve found a way to work around their disability. There are other factors, she said, that recipients must also weigh when determining when, how and if they go back to work, including age, education and the severity of the disability.

Pilgrim-Hunter is 53 and she wants to go back to work as the state senator in the 33rd Senate District, mostly because she thinks she can do a good job. But also because she believes strongly that Espada, who has been a magnet for controversy since he took office a year and a half ago, needs to go.

In the interview, Pilgrim-Hunter said she wasn’t trying to hide her disability, or her Social Security benefits — she mentioned the disability, not the benefits, in her announcement speech — but that she didn’t want people to focus on it or pigeonhole her because of it.

“Don’t reduce me down to a broken body,” she said.

A Body Breaks Down

The BoogieDowner post mentions an injury Pilgrim-Hunter sustained in 2000 while lifting boxes for her job with Avon in 2000. But Pilgrim-Hunter said she’s been dealing with pain stemming from a congenital birth defect in her spine for her entire adult life.

Pilgrim-Hunter, an immigrant of Guyanese descent who bounced around seven different countries during her early years, was born in England. She moved to New York at the age of 6. In New York, doctors noticed a curve in her spine and tried to correct it by having her wear a brace that wrapped around her body from the top of her chest to the base of her spine. She called it the “bird cage” and it forced her to wear clothes three sizes too big.

When she hit her teens, she dropped the bird cage and went about the business of being an active high school student who played basketball and ran track. She dreamed of becoming a dancer.

At 18, she began periodically falling down, often while walking up or down stairs. Doctors discovered that a nerve reaching down into her leg was caught between two vertebrae, causing her leg to go numb and leading to the falling episodes. They wanted to do surgery immediately, saying she could lose her leg. Even with the surgery, doctors gave her a 50-50 chance of ever walking again.

This was three and a half weeks before graduation and prom. She also had a final dance project she wanted to complete. She decided to hold off on the surgery, walk across the stage to receive her diploma, dance at her prom and finish her dance project. “If I never walk again,” she told herself and her mom, “I’m going to do those three things.”

When she finally went in for surgery, doctors cut open her back and discovered that her spine was not attached to her pelvis like most spines. It’s a condition called Partial Spina Bifida, or basically, an incomplete spine. So surgeons cut out a piece of her hip bone and used it to fuse her spine to her pelvis.

She would live in pain for the rest of her life, but doctors told her she could lead a relatively normal life, which she did. She married, had two children and developed a career in retail, where she rose to the position of regional sales manager for Avon.

Turning to Govt. Benefits

In 2000, she was getting ready for an all-day recruitment effort at a Bronx shopping mall. She thought one of her associates had loaded all the heavy boxes, leaving her with what she thought were the lightest loads. But when bent to pick one up, it proved much heavier and she felt something “pop” in her back.

This time when she saw doctors, they told her that because of her condition, she never should have had kids, worked in retail or been nearly as active as she had been. Previously, doctors told her she could live a normal life. Her experience with being misdiagnosed and misguided by doctors is “why I’m so keen about [improving] health care,” she said.

For years, she had dealt with the pain, but this latest injury was debilitating, she said. She had difficulty moving and she couldn’t get comfortable enough to sleep. She underwent extensive physical therapy and was often bed-ridden.

At this point, she began the process of applying for Social Security disability benefits, which she felt was her only option and something she was entitled to after paying into Social Security for the previous 22 years.

It took six years and a “humiliating” medical evaluation process to get the benefits. During this time, Pilgrim-Hunter said she found herself “suddenly alone, in my bed, on 12 different medications.”

Emerging an Activist

After living in a medicated haze, Pilgrim-Hunter also realized, after years working in retail, she had done nothing to connect with her community. Her friend told her that once she felt a little better, she would take her to a meeting of the Northwest Bronx Community and Clergy Coalition, a local grassroots, multi-issue community organization.

Soon after, Pilgrim-Hunter said she made a conscious decision to stop taking as much medication and start involving herself in the efforts of the Coalition. It would be painful, but also therapeutic.

“When I got the disability [benefits], I said, ‘the government is supporting me, I need to give something back,” she said. “In order to minimize the pain, you need to get involved in other things.”

The rest is history. Pilgrim-Hunter began working on campaigns to alleviate overcrowding in public schools (her daughter attended perennially overcrowded Kennedy High School) and to improve immigrant rights. She proved a natural leader and eventually became a board member and one of the Coalition’s chief spokespeople.

Around the same time, she took over as board president at Fordham Hill, the largest privately owned cooperative housing complex in the Bronx, where she lives. By several accounts, she has led a turnaround of the cooperative’s shaky financial situation.

Last year, Pilgrim-Hunter became the face of the Coalition’s fight for living wage job guarantees at the Kingsbridge Armory, which the city and developers were planning on turning into a giant shopping mall. The mall plan was killed by the City Council when living wage job guarantees weren’t included in the final plan.

Questions, Anger and Answers

The blog post last week questioned how she could do all of this community work while claiming she was incapable of working for money.

The answer, Pilgrim-Hunter said, is that she is able to “control her work environment” in doing her volunteer work for the Coalition. In a traditional job setting, she would be forced to work set hours and probably have to sit or stand for hours at a time, something she can’t do because of her condition. And manual labor is out of the question.

Michael Waterstone, a professor at Loyola Law School who specializes in disability law, said that not only is it not illegal, amoral or unethical for Pilgrim-Hunter to run for office, but that she should be celebrated for her efforts. "If anything this person has an important life experience that she could bring to bear in elected office from a public policy standpoint," he said.

Pilgrim-Hunter said she has attempted to get employment (and even attempted to start her own business) over the past four years, but nothing has worked out.

In 2008, 453,325 people received disability benefits in New York state, according to data compiled by the Social Security Administration. Only 3,256 of those people (less than 1%) had their benefits withheld because they secured substantial work.

Waterstone said "there are all types of barriers for people trying to get employment while on disability."

For one, he says, there’s a stigma attached to those with disabilities and two, employers don’t want to have to deal with the health insurance headaches that come with legally disabled workers. He also says the disability system is poorly designed for people who want to go back to work because it was set up for elderly, immobile recipients.

Ruth Colker, an Ohio St. law school professor who is an expert in disability discrimination, agrees with Waterstone that people with disabilities often discrimination, which prevents them from doing work that they otherwise could perform.

As for Pilgrim-Hunter’s situation, Colker said in an e-mail: "It is of course possible that the state senator job because of its flexibility poses the perfect job for her despite her disability but there are no other jobs that she could possibly perform. Of course, if the state senator job is exactly like dozens of other jobs which are available in her geographical location and which she has steadfastly refused to seek as employment then one might argue she is being unethical in hiding the extent of her ability to work."

In April, Pilgrim-Hunter announced her bid for state Senate in the 33rd District. As with her position at Fordham Hill, Pilgrim-Hunter said she would have a staff to help her deal with the constraints of her disability. She added, “Just because I have disability doesn’t mean I don’t have something to contribute.”

In addition to her community work, Pilgrim-Hunter says her medical and other history makes her an ideal representative in the district. “I couldn’t be more representative,” she said. “I’m an immigrant, wife, mother, and I’m disabled.”

(Numbers aren’t available for the 33rd Senate District, but in 16th Congressional District, which encompasses much of the 33rd, there were 16,418 disabled workers like Pilgrim-Hunter, as of 2009.)

Pilgrim-Hunter said she was “shocked” and “dismayed” by the blog post and some of ensuing comments, which she felt were “mean-spirited.”

“Nobody crawls into bed with me to feel the pain I feel,” she said. “People know that I’m genuine and that I fight for the people because I am one of the people.”