Disability Disclosure, are you prepared?
Updated: Aug 3
Note: An abbreviated version of this blog post was posted on October 29th in the Florida Times Union|Jacksonville.com to read that version click the link. To read the full version please continue on.
75-80% of all disabilities are invisible.
There is a saying, “my disability may be invisible but your reaction to it is not.”
People with disabilities have a variety of concerns when disclosing their disability to an employer. Will people see you differently, treat you differently, say something awkward? Will you still be chosen for key projects?
Disability disclosure isn’t simply about being ready to share something deeply personal. It is also about being adept to respond to the various reactions people will have when you disclose your disability. Not all reactions are good, or even appropriate.
When I was 13, I was diagnosed with Epilepsy. I had been having seizures for several months and the neurologists explored many options before confirming Epilepsy. I was put on medication, but there was no guarantee I wouldn’t have a seizure from time to time. Because of this, my parents encouraged me to tell my teachers about my diagnosis.
I didn’t realize it at the time; but my parents were teaching me to self-advocate. My teachers were compassionate, and each wanted to know how they could be supportive. But one teacher, Mrs. Smith (not her real name), had a different reaction. She cried. I mean big, ugly cry. I was shocked, and quite frankly not sure what to do.
Mrs. Smith held my hand, searching for something comforting to say and since I was attending a Catholic Elementary School, she turned to religion. She reminded me that Joan of Arc had Epilepsy. Then she said, “you are lucky to be diagnosed now because we understand more about Epilepsy and Epileptics are no longer burned at the stake like Joan of Arc.” I left her classroom holding a biography of Joan of Arc in my hand, and feeling confused. What had just happened? My young mind was not prepared to process this, was my diagnosis more "tragic" than my parents had let on? Or was she just emotional?
This was my first interaction (of many) that showed me people don’t always respond how you think or would expect when you disclose your disability. To this day, disability disclosure can trigger uncomfortable responses such as fear, sadness, or pity.
Disclosing a disability at work presents its own set of challenges and risks. Even the most professional of colleagues are often not prepared for a disability disclosure conversation.
Here are a few of the reactions and questions I have gotten over the years when disclosing my disability at work. Hint to Human Resources and other professionals - -you want your organization to be properly trained, so appropriate responses replace awkward exchanges.
Oh, my dog/cat has Epilepsy. So, I understand and am prepared to help. (I often joke I could retire if I had a dollar for every time, I heard this.)
That reminds me of this great Epileptic joke we used to tell in high school…. This was an attempt to make light of a serious subject, but not appropriate.
Did you take your medicine today? I had one manager when after I disclosed that I had Epilepsy and was on medication would ask me daily if I had taken my medicine. When I asked him to stop, he said he was just showing he cared.
Thanks for sharing. Is there anything that you need? Or anything that we should know how to do or be prepared for if you have a seizure at work?
Thanks for letting me know. Do you need anything at your desk or any changes in our area to help you?
Thanks for telling me. Do you need an accommodation or any resources to help you do your job better?
Thanks for sharing. Is there anyone else on the team or HR that you feel would be important to talk to about your disability?
It’s great that more companies are encouraging disability disclosure. Disclosure helps us have better conversations about disability in our workplaces and can help create more disability inclusive environments. But we must make sure managers, co-workers, and our human resource professionals are prepared for disclosure conversations.
Practice saying the responses in the “Appropriate” column. When someone discloses, wait a few days and then ask for feedback. It’s easy. Simply say: “I want to make sure that I am supportive and encouraging to others coming forward to disclose their disability. Is there anything that I should have done differently, or could have done better to address your needs at our workplace?”
Disclosing a disability, even at a great company, involves risk and vulnerability. The process can be positive – for employee and employer -- if everyone is prepared and understands the company’s accommodation procedures.
A diverse, inclusive workforce is a strong workforce. Recruiting, hiring, retaining and promoting people with disabilities depends on co-workers, supervisors and HR pros knowing how to respond appropriately to disability disclosures.
Being compassionate and well-meaning is a great start. But to truly meet the needs of all, your company must be professionally trained in how to address disability disclosure in a direct, appropriate and productive way.