I recently attended the McGinley-Rice Symposium on Justice for Vulnerable Populations: The Face of the Person with a Disability at the Duquesne University School of Nursing.
To eloquently capture all that was covered would take up more time and space than I have the bandwidth for at the moment, but needless to say it was an inspiring and eye-opening experience. (You can view some pictures,here.)
We learned about ADA laws in regards to employment and education. We talked about what it is to be a person who is disabled. We discussed faith and religion and how they can intersect with illness. And we talked about how far healthcare has to go in terms of accommodating patients who are chronically ill or disabled.
I was so grateful to be able to attend this event, and I thank Duquesne University for the opportunity. Social justice is such an important initiative that often gets overlooked because of greed, politics, or stereotypes. I am happy to be a part of the movement that gives a face to those of us who live and thrive with a disability.
Some important conversations were started at this event: how do we identify ourselves? What language do we prefer when referring to our disabilities or illnesses? How much do our healthcare providers really know about our medical issues: are WE the experts, or are they? Does being in a wheelchair prevent you from getting proper medical care because doctor’s offices don’t have the right kind of accommodations? Are serious medical emergencies sometimes overlooked, missed, or ignored because doctors and nurses tend to attribute everything to your disability or your ongoing chronic illness? How does society treat you? What could your family, friends, loved ones, peers, coworkers, and employers do better when it comes to your condition? What is being too “politically correct” when it comes to disability, and when is being “too-PC” simply human decency/asking for dignity?
These and other questions were raised. Some topics led to solid answers, while others left us wanting more. I, for one, realized that I had, in fact, been discriminated against in previous jobs. I learned a lot about what we should and should not disclose to employers or schools. I learned about what is considered “reasonable accommodation” under the law. I realized that I wish I’d learned it sooner. But now, I know. And knowing is half the battle. You can get a good overview of ADA laws, here.
Stunningly, just days after my attendance at the symposium, a friend of mine, who also lives with chronic health issues, send me a series of text messages that left me feeling frustrated, outraged, and just plain ol’ sad. Her story went something like this. (I have the texts here, but I’m going to paraphrase our conversation for succinctness and clarity.)
This lovely woman is a graduate student at a local university. She lives with chronic illness (several, actually, as so many of us do.) They are debilitating and disabling, at times: a fact to which many of us can relate.
She had shared with me during a little coffee date that she had felt excited to work on a group project about invisible disabilities. She felt let down when it seemed like only mental/emotional ailments were being discussed, while conditions like hers and mine were largely ignored. It was her chance to be heard, and yet, it seemed no one wanted to hear it.
A few weeks go by. She texts me, saddened and, probably, angry, stating: “Just got out of a class about diversity, where the professor proclaimed that chronic illnesses aren’t disabilities, and those with chronic illness do not deserve special treatment.”
She went on to say that “there are no words” to describe the sheer ignorance and frustration of this, and I’d have to agree: how do you argue with the kind of ignorance and insensitivity that she’d just witnessed at one of the best public universities in the nation?
My friend wants to go into social work or become a therapist for people who are sick or disabled, because, like me, she wants to help others who deal with similar issues to her own. She felt frustrated that one of her own professors was not acknowledging the validity and severity of a life of illness, and, I would presume, felt lost how one could teach a course on diversity (which I’d assumes includes those of us with disability,) during a grad school program in social work (with the goal of social justice, civil liberties, and helping others,) and yet still state that chronic illnesses aren’t disabilities and that chronic illness patients don’t deserve any extra attention or special treatment.
The college she attends is a pretty liberal school. And, like I said, it is a GREAT school. So, the close-mindedness is shocking. There seemed to be far more empathy and inclusion at the disability symposium I referenced above, which is at a private, conservative Catholic university. Interesting how that works. (And further proof that we should not pre-judge or label others based on assumptions or stereotypes.)
At any rate, our convo continued. She said, “To add to the unbelievability of the professor’s comment, the topic for the class this week was ABLEISM! We had just listened to a speaker who does advocacy work int eh community, and the whole class had to turn in papers on ADA regulations. On top of that, four other students and myself had just done a presentation on ADA and invisible disabilities. After all of that, he chose to ‘pick on’ invisible disabilities in general, and chronic illnesses in particular.”
My friend is also registered with the Disabilities Resources and Services center on campus. (Note: nearly every campus has one of these. Another useful resource is OVR if you live in Pennsylvania.) The professor knows this. And yet, this ignorance occurs. After my long day at the McGinley-Rice Symposium on disabilities, I hope that my friend will file a complaint. After all, chronic illnesses DO count as disabilities under both the ADA and FMLA. While not every chronically ill patient qualifies for a handicapped parking pass, a disabled persons card, or social security disability insurance benefits, that doesn’t mean that they aren’t disabled and suffering immensely debilitating health problems and physical difficulties.
I hope that this story gives you a glimpse of what people with invisible disabilities often go through, even with people who, allegedly, know and understand the “facts.” It hurts to feel invisible, even if your illnesses are.
Be kind. Open your mind.