back up1

A friend of mine from high school works for KIT (Kids Included Together) and I’ve enjoyed following her training schedule on FaceBook as it takes her literally all over the world. KIT, “… specializes in providing best practices training for community–based organizations committed to including children with and without disabilities into their recreational, child development and youth development programs” (KIT, 2014, para. 1). I touched base with her recently to ask if she and I could dialogue about what inclusion looks like on a community college campus. I want to be more involved at my workplace with the Student Services department and Disabilities office to help raise awareness about what disABILITY, chronic illness, and invisible conditions are (and are not), and to help train professors and staff to provide an atmosphere of inclusion, acceptance, and a place to grow for all who are differently-abled.

There seems to be such stigma attached with certain diagnosis or disABILITIES. I cannot stress to fellow professors how important it is to let students know at the very beginning of class:

1. You welcome transparency about any and all invisible illnesses, chronic conditions, or disabilities.

2. You provide assurance of confidentiality.

3. You provide a platform in which students can provide feedback about classroom procedures or policies that make it difficult in light of their diagnosis or condition.

4. You become a “safe person” to any who wish for a faculty advocate to coordinate with Disability Support Services and/or other faculty.

Some unfortunate stigmas attached to living with a disability or chronic condition, include:

1. You are looking for special favors because you are “special”.

2. You are not capable of doing well in class because you have to do things “different than the norm”.

3. You have a persecution complex.

4. You are a drama queen/king.

Some of the strongest people I know are people who live daily with an invisible illness/disability or chronic condition. They not only often have to find “new ways” to do something that to the normal person seems “easy” (for example, washing hair… pretty darn difficult if you have a balance disorder), but they also have to navigate a world that harshly criticizes, misunderstands, or labels folks who struggle with these issues. Some of the most difficult invisible illnesses to positively advocate for are those with mental illness or disorders. Good gravy, talk about your stigmas! They are often considered “crazies” or “fragile”, and people often avoid them after disclosure. This sucks IMHO. Some of my favorite people are those who happen to have mental illness or disorders. Talk about your resilient people! 🙂

Real Responses that HELP

As I have been thinking about inclusion from an adult perspective, I have found that in many arenas, peers, co-workers, and colleagues want to make their event fully accessible to you but do not know where to start. I have learned in the decades I’ve lived with invisible disABILITY, that we should strive to not only point out the problem – but also the solution. So here is where I need your help. I want to put together a document that can be downloaded by readers so that folks can use the collaborated effort of YOUR ideas to assist when they have problems of their own.  So email me your examples, and I will include them!  – in the subject line please put: Hearing Elmo Problems and Solutions.

Here are some examples of my own to get your brain working on ideas yourself! Not all are “cut and dry” problems and solutions. Sometimes the solution is simply a candid response. Read on:

1. PROBLEM: It doesn’t help when you yell when I’ve indicated I can’t hear you as added volume distorts your words and draws attention to both of us.

SOLUTION: If I have indicated I didn’t hear you, please make sure you are facing me. It helps me to see your face. Speak in a normal tone and try not to over-enunciate words as this distorts the way it appears on your lips. If I still cannot make it out, consider writing it down, or re-phrasing it.

2. PROBLEM: It’s great to have accessible venues as long as the accessibility options are available.

SOLUTION: Are there elevators available for those who cannot take stairs? Please make sure these are not blocked. (At a recent workshop I attended, when the elevator opened, the registration desk was backed up to the opening, blocking the exit. They were horrified and quickly moved things, saying, “We didn’t know someone was attending who needed this“. It’s actually against the law to block accessible options from use. This includes handicapped parking, bathrooms, ramps, making sure hearing loops are actually switched on and working, and much more. (I once complained that the handicapped stall in the ladies room had been “out of order” for a couple of days and was encouraged to use the other available stalls until it got fixed. WHAT? *grimace*).

3. PROBLEM: People think if I just plan ahead and “rest up”, I will be able to participate in an event.

SOLUTION: When I have to bail even last minute on something I hoped to attend, I try to provide as much notice as possible. You may need to remind organizers or colleagues that how you feel “day to day” is often out of your control and that you regret the late cancellation. Something as uncontrollable as the WEATHER can wreck havoc with my plans. We aren’t trying to be butt-heads and we very likely really wanted to participate. Please do not make it worse by giving us a hard time or insinuating we planned poorly.

4. PROBLEM: The workshop has several small group activities but the room does not allow the groups to separate very far. This may cause difficulties for those with any degree of hearing loss with the “bee hive” effect.

SOLUTION: Go up to the workshop facilitator and request to allow your group to go out in the hallway, or a nearby room so that it is quieter so that you can participate. (If you know in advance the workshop may incorporate these kinds of activities, see if the conference/convention center has assistive listening devices, or invest in your own so that you can carry it with you always. Be a “hearing loop” advocate!

I look forward to receiving your own ideas and together presenting a form we can share!

Finally, you may be wondering about the picture I chose for this week’s post. The truth of the matter is, we all have the power to wound or injure another person with words, actions, or lack of action. I want to remind my own community of folks who live with chronic illness, or invisible disability that you are not alone. Yes, people can and will hurt you. But there is strength in numbers and you are not alone. I get knocked down from time to time, but you seriously are going to need “back up” to keep me down. This community is very resilient. We bounce back because we’ve learned there aren’t a lot of other options.

Send me your own ideas of problems and solutions to things that you have perhaps experienced yourself. I leave you with one of my favorite “list graphics”:

my chronic illness

Denise Portis

© 2014 Personal Hearing Loss Journal

Kids Included Together (2014). KIT: About us. Retrieved on June 8, 2014, from

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