A week or so ago, I was watching The Rachel Maddow Show, and she began to talk about the secret train platform located under the Waldorf-Astoria Hotel in New York City. As she wove her way to the main point of the story—the Chinese company that would now own a hotel at which U.S. presidents have been staying and at which they still stay—she took time out to discuss the ways in which Franklin D. Roosevelt used the train platform as a means to disguise his disability so he could enter the hotel without anyone seeing him.
Roosevelt was crippled by polio and needed a wheelchair before he ever ran for president. Throughout his political career from 1921 until he died, he took great pains to hide his disability in public by managing to walk short distances with a cane and by standing for photos when he could. The image to the left of Roosevelt with his terrier Fala, and a friend’s
granddaughter at Hill Top Cottage in Hyde Park, N.Y. is one of the few images of Roosevelt in a wheelchair (Lucas Reilly).
Disability, no matter its type, remains fixed in the public’s mind as a condition that makes a person incapable of achieving even minor success. Roosevelt achieved great success as the only president to serve four terms in office, but he did so by hiding his disability from the public’s eye. I often wonder if he were alive today whether he could become president given the constant presence of the television camera’s eye—something that was just beginning to be available during his final terms as president.
That the public and the government had some idea of his disability is evident since the year Roosevelt died, 1945, is the year that the “National Employ the Physically Handicapped Week” was born. It was signed into law and acknowledged only those who were physically disabled (like Roosevelt), and it was celebrated during the first week of October. Seventeen years later (1962) the word “physically” was removed from the law, and 43 years later (1988) the week was expanded to a month, and the name was changed to the “National Disability Employment Awareness Month” (ODEP).
Granting Rights to those with Disabilities
For me, a disabled woman in the year 2014, it is quite interesting to follow the chain of events that have actually granted rights to the disabled versus asking that the public be aware of their need for employment purposes. In 1973 the government took its first steps towards ensuring that Americans with Disabilities had actual employment rights by passing the Rehabilitation Act of 1973, which required employers of “contracts and subcontracts that exceed $10,000 to take affirmative action to hire, retain, and promote qualified individuals with disabilities.” However, it wasn’t until 1990 (45 years later) that the Americans with Disabilities Act (ADA) was passed, that all employers were asked to take affirmative action to hire those with disabilities. The ADA also reinforced the idea that buildings be made accessible to those with physical disabilities.
The ADA is one of the more recent acts to be passed in order to protect a minority group. Only two groups that I am aware of have waited longer than the disabled to receive employment protection: the first is those whose genetic information may make them vulnerable to being hired (the Genetic Information Nondiscrimination Act was passed in 2008), and the second are those who belong to the Lesbian, Gay, Bisexual, Transgendered, and Queer/Questioning (LGBTQ) community. President Barack Obama signed into law this past June protection for the LGBTQ community in cases of federal government and contracting agencies, but a more sweeping act has yet to be passed.
Earlier acts to be passed to protect those with a minority status were the Civil Rights Act (passed in 1964 and 26 years before the ADA) and the Age Discrimination and Employment Act (passed in 1967 and 23 years before the ADA).
That many protections for Americans with disabilities have been slow in coming and have been even slower in providing excellent protection can be matched to the American public’s awareness of the existence of October as Disability Employment Awareness Month. It seems that all Americans (and rightly so) are aware of October as Breast Cancer Awareness Month, which was created by the American Cancer Society and a major pharmaceutical company. Many of us are also aware that September 15 – October 15 serves as National Hispanic Heritage Month, and those of you who know your Lesbian, Gay, Bisexual, and Transgender (LGBT) history, may know that October served as LGBT History Month before President Clinton declared June Gay and Lesbian Pride Month and Barack Obama followed suit by renaming June as Lesbian, Gay, Bisexual, and Transgender Month.
I actually wasn’t aware of most things dealing with the disabled until I became disabled myself. My only other understanding occurred while I was living in Texas. Power went out on the campus where I worked for over two hours. One of my students was wheelchair bound and stuck on the second floor of a campus building during this whole time. Our only option was to physically carry him and the chair to the first floor—for obvious reasons he was not comfortable with this idea.
As someone with disabilities I have found it interesting that we so often fail to acknowledge that those with disabilities are one of the only groups that the Equal Employment Opportunity Commission (EEOC) protects that all of us can join unwillingly. It is also the group with one of the lowest employment rate. In what I often see as my battle to stay employed, the statistics shown below from the Cornell University Employment and Disability Institute help me to see how lucky I am to have my job.
- In the year 2012, an estimated 33.5% (plus or minus 0.28 percentage points) of non-institutionalized, male or female, with a disability, ages 21-64, all races, regardless of ethnicity, with all education levels in the United States were employed.
- In Georgia of the same year, an estimated 30.9% (plus or minus 1.34 percentage points) of the same group were employed.
- Of those who are disabled in the United States, only 20.9% (plus or minus 0.24 percentage points were employed full time. Georgia statistics for the same year are nearly the same: 21.2 % (plus or minus 1.19 percentage points) were employed full time.
- Those who are disabled are unlikely to have earned a college degree: only an estimated 12.4% (plus or minus .20 percentage points) of non-institutionalized persons ages 21 – 64 with a disability in the United States have an educational attainment of a college degree or higher.
- The number of those with disabilities living below the poverty line in 2012 was 28.4% (plus or minus .29 percentage points). In Georgia this number was 30%.
My Experience With Disability
I feel quite fortunate that the figures listed above do not apply to me. To begin with I was luck to have spent the first 39 years of my life without a disability—like Roosevelt I was able to earn a college degree and in my case two graduate degrees before
facing disability. While one never wants to become disabled during the first year at a new job, I was lucky here as well. I had a job when I became disabled—I didn’t have to face finding a job after I was disabled. I was also lucky because I had already worked in academe as a professor for four years and had begun to accumulate the types of scholarly work required to earn tenure and promotion at my current job, and, yes, I had made sure the work would count towards tenure and promotion when I was hired. That said, I had to learn about the ADA and the Job Accommodations Network (JAN) quickly in order to keep my job.
Because such a low number of people with disabilities enter the ivory tower of academe as students, even fewer enter it as faculty. I was hired at Southern Polytechnic State University in 1999, the same year I was diagnosed with Multiple Sclerosis. I left Atlanta to spend Thanksgiving Break in Houston, Texas with some friends, and I came back from the break knowing that the lack of sensation and temperature on the left side of my face and my inability to walk a straight line or to maintain my balance indicated that something was quite wrong. The diagnosis of Multiple Sclerosis on December 3, 1999, confirmed that I was right, and a holiday season spent trying to relearn walking, to move beyond mind-numbing fatigue, and to pull spring lesson plans together raised questions on whether things would every be “right” again.
A few weeks into the spring semester in 2000, forced me to acknowledge that no, things weren’t going to be okay, and I needed to find assistance or I would not make it through the school year. I spent what free time I could muster scanning the SPSU website for information on faculty disability services. None existed and none continued to exist until last year when Human Resources posted two pieces of information at its website: “Compliance Postings” and “Disability Accommodations.”
Later that spring I finally decided I would have to use the student disability information in order to find help. It was the woman who ran student disabilities at the time who pointed me to JAN and to the Faculty Coordinator of Disabilities Services (yes, we were lucky to have such a coordinator at the time since this position is no longer in existence). Between these two entities and my department chair at the time, I managed to negotiate accommodations.
One of the first accommodations I had to request was an accessible door on the J Building at the handicapped parking lot. The J Building, like Stingers and the Parking Deck, began as new buildings with poor access due to poor planning. The J Building had accessible doors at the two main entrances, hidden on the back side of some pillars, and neither Stingers nor the parking deck had them at all. I have often felt personally accountable for the existence of accessible doors on numerous campus buildings as well as for the sidewalk blocks being shaved down for scooters and wheelchairs.
Other Stumbling Blocks
While we don’t consider the means that determine tenure and promotion physical structures that get in the way of faculty achievement, they may as well be for people like me. My energy issues and disabilities make travel for professional development and scholarship quite difficult. Picture me on a scooter going down a street, speed knob turned to “rabbit,” followed by a motorcycle cop, and you will have accurately conjured up one of my conference experiences. That same conference offered me entrance to the main hotel through a revolving door or through a side entrance without an accessible door.
I went through my first evaluation at SPSU in January of 2000. I was using a walker and a wheelchair at the time. It was noted on my evaluation that I seemed to lack “energy.” I didn’t know whether to laugh or to cry since fatigue is one of the major components of MS. I think I decided to do both. What was beneficial about this review was that I decided to get the facts on Multiple Sclerosis, accommodations, employment, and disability fast. I guess I decided I should “lean in” as Sheryl Sandberg, Facebook COO terms going the extra mile so often required of women leaders.
“Leaning in” can be seen as overly overaggressive and not becoming of a woman. At times I have felt I am desperately trying to hold onto a job or I will join those in poverty (a sure bet when just one of my eight drugs costs over $5,000 a month). I don’t worry at these times whether others saw me in such a light, especially if I felt they were trampling on my ADA rights.
Otherwise, I have learned to “lean in” by raising my concerns again and again and again. It only took me ten years of effort to get information about the ADA and job accommodations to be posted on the SPSU website. So far being willing to keep my battle going through utter stubbornness has helped me to beat the following odds that most people with Multiple Sclerosis face. It’s hard to find accurate data due to the fact that very little data is collected for MS as a disabling factor on its own, but here is what I found in Janet E. Joy and Richard B. Johnston, Jr.’s Multiple Sclerosis: Current Status and Future Strategies:
- Within five years of diagnosis, 70 to 80% of people with MS are unemployed (data collected in 1975).
- 72% of people with MS are unemployed (1998)
- Three types of barriers exist for employment: personal (disease characteristics, education level, and history of employment), societal (physical inaccessibility of job sites, public attitudes, and inadequate job accommodations), and programmatic (vocational rehabilitation and policies in the United States).
This final piece matters most to me. Managing fatigue (an invisible symptom) and dealing with workplace demands particularly when on a deadline is difficult. Lack of notification of a promotion deadline this past year and lack of accommodations for the memory and fatigue issues I would have put into place if I knew it was necessary to ensure notification created a situation in which I could not go up for promotion. I operate on four cylinders of power at best–attempting to operate on five or six cylinders simply puts me in the garage.
I will now have to “lean in” some more as I move to becoming a member of the Kennesaw State University’s faculty. While I have been working since August to ensure my current accommodations will transfer to KSU, little progress has been made. While the KSU employee handbook covers all the information SPSU located on its human resource website, I haven’t yet figured out who I need to contact in the human resources department. I clearly haven’t leaned in enough so far. I’ve now contacted the human resource office on the KSU campus so wish me luck—maybe I’ll get a chauffeur to drive me from the Marietta campus to departmental meetings on the KSU campus?
It looks like I completed my blog in time to celebrate the end of Disability Employment Awareness Month. It’s clear that we as a country could still do quite a bit more to actually employ the disabled. In the meanwhile I would like to call on the disabled to at least be more aware and affirming of each other. I know of one minority group that seems to show a bit more solidarity. Maybe we could imitate them by giving each other a head nod of acknowledgement or a “what’s up?”or a fist bump? Currently I’m waiting for scooters to become the ride of choice on campus. Maybe I’ll have to take Keith Hopper up on his offer to pimp my ride for scooters to really take off.
In the end I would actually like everyone to rethink America’s cultural beliefs concerning the disabled. We are more capable than what our employment numbers show. Let’s not turn a blind eye, a deaf ear, or find that we don’t have a leg to stand on as it concerns the rights of those with disabilities. Let’s pay attention to what the disabled are actually capable of doing instead of vice versa.