In many ways technology has eliminated some of the barriers people with disAbility have faced as captioning, audio description, special keyboards and applications, and inclusive design have been made a priority and even requirement at many schools and workplaces.
I am very grateful that my career is on a college campus. College campuses, at least in my experience, work hard to meet the needs of diverse groups of people. Outside of campus is a different story.
My mother died on March 6th from ALS. It was 8 months after diagnosis and it was not a “good death”. At the end of March, I contacted my therapist whom I’ve not seen since 2016. She has since began focusing on eating disorders in youth and referred me to a colleague as she did not have any “openings”. I made an appointment and went to the office for the next available. Unfortunately, miscommunication occurred and she was terrified of dogs (Finn goes everywhere with me). Her office was tiny and barely held the 3 of us and the smell of MICE was so evident, I was wrinkling my own nose as much as Finn was distracted in sniffing every inch of carpet. Needless to say I needed a “PLAN B”.
I strive so hard to be independent, and it gutted me when I discovered that mental health organizations were still mostly doing virtual visits. Very few were doing face-to-face sessions. In hindsight, perhaps this was good since any medical facility I go to still requires face masks and my communication issues are tripled in complexity when trying to hear through a face mask. However this is a different story better retold in another post about how hard it is to WEAR a face mask when you have a cochlear implant and huge behind-the-ear hearing aid in each ear. They simply will NOT stay on!
Because I use the phone only with great difficulty, I would contact the clinic/organization through their website and filled out detailed forms to gain an appointment. I would get a standard email response to ‘please call the office at ###-#### during normal office hours to make an appointment’. When responding that I could not do that, many were not email clients that would accept a response… outgoing only. I contacted 23 mental health practices from the end of March to the end of October.
Backing up a bit, I have persistent depressive disorder (PDD) and panic disorder. These have been under control for a decade or more with medication. The grief of losing my Mom and the manner in which she died, dropped me about as low as I have ever been in my life. I began having panic attacks nearly every night from horrific dreams. I have gained weight and found myself sleeping whenever I didn’t have work to do. Work itself truly made a difference, for I love what I do and truly feel I make a difference where I can.
However, knowing I needed HELP and not being able to CONNECT with anyone, caused me to just sink into a state I’ve never found myself in before. Ironically, I am the advisor for “Active Minds” on campus. I know the warning signs and know when intervention with a mental health counselor is imperative.
I COULD NOT GET AN APPOINTMENT.
On October 28th, a Friday, my husband and I were both working from home and virtually that day. Before his day got started I went into his office with Finn, closed the door on the other puppies, sat down opposite his startled self and said,
“I’m in trouble. I am going to need your help to find a counselor. If I don’t get help I won’t be here by Christmas.”
To say his jaw hit the floor is an understatement. He knew I was feeling depressed but as I poured it all out for him including a plan to just stop the hopeless pain and suffering, letters to kids and a few others, etc., he cleared his calendar that morning and we got to work.
Over the next 2 weeks we enlisted Behavioral Health Services, part of our work’s employee assistance program. Over the next 3 weeks, I was contacted via email and through an online portal 3-4 times a week while Kentrell worked his butt off trying to help me get an appointment. Mr. Thomas was extremely frustrated in how hard it was to connect a person with disability to a counselor. (He is actually a licensed counselor). Kentrell and my husband found a way for me to stream a phone call through the computer and get live, accurate captions (Innocaption) and eventually connect with a new practice that specializes in grief, depression, and even disabilities.
It has saved my life.
Y’all? I am a fighter and I am strong. I am a disability speaker and award-winning advocate. I only share this to say, I NEEDED HELP AND COULD NOT GET IT.
Some of the things I was told when I was able to actually get a real person to respond to my email:
“We are sorry, we don’t allow captions in our virtual appointments because of privacy laws”.
“We cannot accommodate a service animal at our current location”.
“We do not have an accessible office space. Can you use the stairs?”
“Our counselor with an opening can do a virtual visit but prefers cameras to be OFF so that she can really tune into what is said.”
“You have vision loss too? Oh wow, I don’t think anyone here can see you” (pun unintended I’m sure).
This post may come as a surprise to some who know me. I thought long and hard about whether or not to be transparent about all of this on a public blog. However Hearing Elmo has always been all about TRUTH in the most vulnerable format, about transparency to promote and educate about disability rights, concerns, and advocacy. Even those of us who appear to have it all together sometimes DO NOT.
What do I hope this post conveys? Well, three things really.
- We must change the way hurting people can connect to those who are trained to help. The connection should be 100% inclusive and accessible to all people.
- Check in with those you know and care about. Not all is at it seems on the surface. Hopelessness loves to hide itself within false smiles and assurances.
- There is nothing shameful about saying you need help. Let’s bury the stigma of mental health counseling in a place that never sees the light of day again.
With warm regards to all my readers…
L. Denise Portis, Ph.D.
2022 Personal Hearing Loss Journal