One thing I’ve often written about here from the viewpoint of someone living with disabilities, is that one of the hardest things to cope with is simply all the “normal” life experiences EVERYONE deals with, but dealing with it with disabilities.
I have a large network of peers who also write and advocate on behalf of the disability community. You would think God in His infinite grace, would allow people already dealing with a lot to be cut some slack with other kinds of challenges. That isn’t how it works though. “My people” often testify and share how hard life has been for them recently. People with disabilities still face the loss of loved ones, sickness (flu and COVID – aargh), break-ups and relationship implosions, job loss, traffic tickets, power outages, and running out of toilet paper! We don’t get a pass on tension headaches, occasional stomach upset, stubbed toes, or WIFI troubles.
Don’t get me wrong! I’m the first to stand on a soapbox and shout to the world how wonderful and worthwhile LIFE is. That doesn’t mean that life isn’t sometimes very hard, and it doesn’t mean that it doesn’t take work. If people with disabilities have one advantage over those who do not live with challenges, perhaps it comes down to these two things:
Experience has us recognizing our limits much quicker and more reliably than those who do not live with disability.
2. We are more likely to ask for help.
Today, my Mom took a fall (or two) just trying to do some normal daily activities. ALS is an unforgiving disease and it is always progressive. Mom has bulbar onset, which means early on it impacted her speech and fine motor skills. It is now impacting mobility as well, however. Hence, the falls today while doing normal everyday activities. My little brother texted while a little freaked out and I calmed him down. Then I proceeded to freak out myself.
Immediately after finding out about Mom’s fall and trying to get a grip on next steps, I went outside to my back porch. We are having very un-December-like weather and the dogs were romping in the yard. The sky was blue and there was a nice breeze. This place is usually like an oasis to me. Instead of enjoying the moment, however, I marched to the edge of the porch, looked up and stuck my finger at the sky while semi-shouting,
“Stop it! Pay attention! My Mom is getting hurt!”
Had a neighbor been watching they may have thought I’d lost my mind. I didn’t care and HE knew Who I was talking too with a little stomp to my foot, with finger pointing somewhere in the direction of where I imagined His face, and shouting about the injustice of it all. God knew I was fussing at Him.
After my little conniption fit and about five minutes of bawling my eyes out, I realized how silly it was to talk to God about what is “fair”. I mean life just IS NOT. We were never promised a life of FAIR experiences.
We are able to learn from experience, and what I have learned is that reaching out for help makes a difference. So I called my little sister in Texas and I texted my Mom’s sweet Monday-Friday caregiver, Sarah. It helped. We have a plan. It gave me a little hope and encouraged me.
My friend, don’t be afraid to rant to God. He can take it and frankly if anyone knows about Their loves ones suffering and things not panning out in a “fair way”, it’s God.
Don’t avoid reaching out for help. The reality is that we are allowing others to be a blessing to US and to help. I tell myself that by not reaching out, I am robbing someone of that opportunity to make a difference in my life that day.
Just being totally honest here, but I yelled at God today. I survived because He gets it. He really does.
I am currently all caught up on grading and the next due dates are not until midnight. Unbelievably, I have a slower day. Y’all? I hate slower days!
WAYYYYYYY to much time to think. Because I am a bit of a worrier (OKAY! More than a “bit”), if I am not busy, slower days are not good days for me.
*Uses Wyze camera to check on Mom* — What is she doing? Does she look comfortable? Does she look safe? She hasn’t fallen again – good. Does she appear to be resting well?
Right about that time all of my Elmos came crashing down on my back. Elsa (my kitty who acts like a cat – cuz we have one who does NOT act like one), is sitting at the top of the roll top desk staring down at me with her best snooty expression.
Elsa: yeah. SOOOO?
I gave her a good scratch under the chin and assured her she was still my stuck-up little trouble-maker. It took me about 10 minutes to get all the Elmos back in place and I ended up moving some around even.
When I was finished, I realized I was smiling. It’s the little things. Ya know?
I really love living in Anne Arundel County. When we first moved to our “forever home” in 2015 (worthy of this auspicious title because we finally found an affordable and accessible home), this Willow tree was huge! Located on a nearby farm that I drove by every single day, this tree shaded a large area of pasture that 10-15 cows called home. You can tell by the size of the original trunk how massive this tree was in its prime.
I do not know if my admiration and affection stemmed from the fact the tree was simply beautiful, or that it bordered this idyllic version of a small farm reminding me of my childhood. Regardless, I became really attached to this tree. I passed it on the way to work and on the way home from work. It was hard not to get distracted by which cow or calf was scratching its bovine butt or shoulder on the trunk of this tree as I drove by each day.
One day I noticed that the owners had added some wooden supports on one side. I had noticed the tree had a slight “lean” to it all along and was curious about the farmer’s attempt to provide assistance against the “lean”. After twenty minutes of “googling” Weeping Willow trees, I discovered that their shallow root system can mean a tree can be at risk in high wind areas or areas with high water tables. I was actually surprised the farmer chose to do this as the effort provided support, but certainly was not aesthetically pleasing. It was the only provisional shade in the pasture, so perhaps the owners sought to prevent a problem before it happened. In this way, the farmer insured necessary relief from the heat of the day for the small herd.
Wouldn’t ya know, last Fall “something” happened to this tree. I didn’t see it happen so could only guess as the trunk was split and the vast majority of the tree lay in pieces on the ground. It made me very sad. Don’t ask me why, but I was a little weepy about the broken Weeping Willow! Over the next week I noticed branches being cut and hauled away. I was surprised to see the core trunk of this once stately giant with graceful crown of “weeping” branches still intact. In fact, it continued to be supported.
I like to think this survivor tree held some kind of sentimental value to the farmers. Perhaps it was a more pragmatic reason such as Willows grow quickly and it provided necessary shade to protect the cattle on a day with unforgiving heat and humidity. Still, I prefer thinking it was for heartfelt reasons they chose to do what they could for this “little engine that could” tree.
I watched all winter. Each day I drove by and thought this tree is DEAD and DONE. Much to my surprise, this Spring the tree began to grow again. It looks a little awkward and perhaps even unsightly with the obvious man-made supports in place. Yet it sprouted new branches with blooms and then leaves. I have a feeling this tree is going to surprise us all.
Anne Arundel Community College, like other schools nationwide, was forced to move all instructions online this Spring. Is it because I’m late-deafened that I really prefer interacting with my students face-to-face? Maybe. I know plenty of instructors with normal hearing that were dismayed by the daunting task of providing an engaging learning environment.
Many teachers provide a little blurb in their syllabus and perhaps a “3 minute mention” about accessible options, assistance and supports, and disAbility services. I realize it is likely because my heart beats within the chest of someone who lives with disAbilities and chronic conditions, but to me the issue should not be mentioned once and then never again. For one thing, there are numerous conditions that do not classify as a disability yet students still benefit from support. There are mental health diagnosis and physical chronic conditions that may make it difficult for a student to be “all in” during classes.
This is why I talk about it… WEEKLY. I remind students to come to me if they need support. Perhaps they need a face-to-face meet in my office. After quarantine, it may mean they needed a Zoom call so that they could talk. Prior to the social isolation restrictions in place, I used the ‘RED PAPERCLIP‘ system. My students have nameplates that they toss in a folder at the end of class. If the red paper clip on the back of their name plate was moved to the top, I contacted them via email and we set up a “text meet”, office hours conference, or FaceTime call.
After Spring break turned into a 3-week long, panic-filled transition period for instructors, I thought long and hard about what to do in place of my “RED PAPERCLIP‘ system so that students could still let me know they needed my support for something. These “somethings” included things like:
A 2-3 day extension on a due date
A listening ear
Further information about the details of a project if the written instructions alone were not enough
Resources and/or connections to virtual mental health practitioners (I’m a teaching psychologist and not a counseling psychologist).
Resources for food, shelter, etc.
Advice and discussion about transfer decisions
Extra credit opportunities
AND MUCH MORE
So what to do if I didn’t have nameplates turned in after class and a visual check of red paperclips? Mid-semester I could only come up with staying in close contact (every couple of days) via email, reminding them of my availability and desire to assist. Do you know during the last 8 weeks of the semester, I received a half dozen texts from students who only sent a picture of a red paperclip? I received OVER a dozen emails from students with “red paperclip” in the subject line of their email. It made me smile. Well… it was a weepy smile, but a smile nonetheless.
For whatever reason, the farmer down the road from me, decided to support this willow tree. Will it ever be self-supporting again? I can’t answer that. Yet with support, this weeping willow provides something needed and necessary to a small herd of cattle. It is growing back quickly. Who knows what it will look like next year? Perhaps it provides some sentimental value to the owner as well. What I can tell you is that without the man-made supports in place, this tree wouldn’t have had a chance at a comeback.
My students know that I get “having a bad day”. I don’t allow them to abuse it but they know they can email me for some additional supports or “course grace”. I am also very transparent about my own good days, bad days, and having to push through ON a bad day. You see? I want to model good self-care. I also want to model the strength required to ask for assistance. Heck, I am “fiercely independent” using cochlear implant, captioning apps, service dog, and cane. However, I have learned there is no shame in asking for assistance. In fact, there is strength in asking for assistance and support.
Do you have people in your life right now who need support? If you don’t, you aren’t looking. We all need some support at different times in our lives. It may be a small “help”, but it can mean the world to someone at a time in their life when they just “need a little something”. I also encourage you to learn to ask for support. I assume many of you who are long-time readers of “Hearing Elmo” have disabilities or chronic conditions. Having extra challenges doesn’t mean you aren’t capable of helping others. It also means that you may need a little support from time to time. Learning to ask in a cheerful, matter-of-fact way goes a long way in positive advocacy. I have learned that many friends, colleagues and even total strangers do not know HOW I need support unless I inform them. It may sound like:
“Excuse me, could you pick up that credit card that I dropped? My service dog has trouble with that unless it is on carpet”.
“The automatic door button doesn’t seem to be working. Could you open and hold the door for me?”
“My fingers are particularly numb today. Do you mind picking up the papers at the end of each row?”
“The elevator in this building is not working today. Can you walk a few steps in front of me as I descend?” (Finn, my service dog, does all the work. However, I need a visual peripheral block to keep from feeling wobbly).
“Can you talk into my phone so my app can caption your voice? There is so much background noise in here I cannot hear you”
“Do you mind carrying my tray from the register to a table? With leash and rolling bag in hand, I cannot manage carrying that safely”.
I have never NOT had someone willing to help.
So keep an eye out for leaning willow trees. Pay attention to any “red paperclips” on the face of or in the body language of someone you meet. In small (and sometimes large) ways, we can make a difference.
I want to handle a sensitive topic and do so with some open and honest dialogue. Before I do that, I highly recommend watching the following video (captioned). Yes… yes, I know! It is nearly 30 minutes long but that is why I am splitting this topic into two posts. The first, a video that I believe does a terrific job of pointing out all of the arguments. Next week I will write about this and provide my 2 ¢ as well as provided peer-reviewed research on this important issue.
For now, please watch and take notes. Please feel free to comment as I never fail to learn from you as well.
Words matter. As I have aged (and hopefully matured) the discovery of what we say and how we say it has evolved as I have learned to communicate with focused intent.
As a person with hearing loss, a typical response for me after you first say something ranges from:
Sorry? (or I’m sorry)
My mama raised me to be polite I suppose. However, I have lived with acquired disability nearly twice as long as I did with “normal” hearing and “normal” balance. Even people with a normal range of hearing for their age may respond with an “I’m sorry? What was that?” if they miss something in an overly noisy room. Because I am more likely to miss what was said or miss the context and fully understand what was said, I am more likely to use these phrases.
After some length of time living with these ingrained habitual responses, I realized how it was actually making me FEEL. I’m all about good manners. I noticed that I was having to say, “I’m sorry?” so much that I was a really, REALLY sorry individual. I also realized that I had nothing to apologize for when I said it. More importantly, it served no purpose. Heck, I give workshops on how to convey to someone you didn’t hear what they were saying.
It is best to educate and advocate. Don’t complain or apologize. I am best served by responding in one of the following ways:
“I did not hear most of that because of the background noise in here. Would you repeat that please?” (Maybe even suggest a quieter location)
“I heard you say, “ya-da yada”, but missed the last part”. (Obviously we can fill in the yada with what you actually heard).
Beware of your volume. Be careful not to “guess”. After all, you are trying to educate folks that pieces of their sentence was lost but not EVERYTHING they said was.
My husband once said to me in a crowded room, “I will see you later. Plan on dinner at six?”
I heard, “… see… later. Dinner and sex?”
When you become more proactive about what you heard and did not hear, you can also suggest synonyms. When my kids were in elementary school, they would joke that they knew more synonyms than anyone else. Having been to all of those hearing loss conferences (thanks HLAA) they learned that if your loved one was having trouble understanding all you said, throw out some different key words. It may end up being a consonant blend they have no trouble hearing at all!
“Grandma called this morning and asked you to call back when you can”.
“I spoke to Grandma this morning. Be sure to call her back tonight!”
I hope you do not misunderstand the purpose of this post. There is nothing wrong with being polite. There is everything right about letting someone know you did not hear them.
– – – – – – – – –
Let me quickly chase a rabbit here and insert that faking that you can hear is much different than faking you are listening. The latter may result in hurt feelings or a punch in the arm. To fake that you heard someone has heftier consequences.
– – – – – – – – – –
What matters is letting them know you did not hear them in the right way. Our age-old habits of apologizing do not fix the problem. You are more likely to encounter people who are tired of repeating something, or start to do so LOUDLY. This only distorts the words making it even harder to understand.
By suggesting a quieter place to go, explaining you may do better with a different choice of words that can be understood in context better, or repeating the part you DID hear so that they don’t have to repeat everything can go a long way to better communication.
Depending on the environment, some other great options to take the place of constantly apologizing are:
If in the car, suggest turning the radio and/or music off so that your ears do not have to compete with their voice.
Ask to step into a building so the acoustics assist you in catching more of what they said to you. Outside, voices can D r… i f… t… a way…
If you know them well enough, ask them to ditch the gum 🙂
Make sure by word and deed that the problem is not something you should apologize for as no one did anything wrong. They didn’t either – so work on making sure they do not think you are criticizing them.
Do not let others say, I will tell you later. They won’t. If you hear this, let them know you will be following up by email to discover what they said because it is important to you.
If you see a conversation going sideways and frustration is evident on the face on the person you are speaking to, ask for an email. Explain you simply cannot hear them in this environment and that you ask they follow-up with a text or an email. Assure them you want to respond as needed.
You have “stuff”. I have “stuff”. Y’all? We all HAVE “STUFF”.
I am — who I am — because of “my stuff”. Your own “stuff” may not define you but it certainly shaped the person you are. It is a wee bit aggravating, however, when someone says “You are such a Super Hero or an inspiration” because of who I am as a person with disABILITY. It’s not that I don’t want to inspire someone. I hope my adult children and grandchildren think I am worthy of imitation and example. I also want to instill in them (and others) their special value because of who they are all because they are here,
within our community,
making a difference where they can.
This Doesn’t Mean…
I am not grateful for all God has allowed in my life to make me the woman I am. I want to encourage. I want to be a good example to others. I want to make a difference. This does indeed mean that I am grateful for my disABILITIES. My hearing loss has taught me about communication and about visual cues about the soul of a person. My balance disorder has taught me to take special care, that every step and turn should not be done impulsively. My cane has taught me to lean on something sturdy to provide a 3-point foundation. My service dog has taught me to pay attention and to have confidence in something with far keener senses than I have. I am grateful for my disABILITIES. Yet, I want to inspire, encourage, and don super hero capes because I am a strong woman.
Your stuff may not be disABILITY. Maybe you are a member of a diversity group and the challenges that has presented has strengthened once weak character muscles. Advocacy and inclusion awareness activities have broadened your scope and influence. You are strong because of it.
Maybe that you are a single parent, a survivor of a serious illness, domestic violence, recovered addict, or live with other invisible or chronic illnesses, have made you the strong person you are.
I’m currently staying with my mother who is recovering from a 2nd hip replacement. A North Carolina sister-friend contacted me and we were to have lunch today to catch up. It’s raining, like… a LOT. This means my balance is wobbly, my tinnitus is roaring, and I’m feeling particularly shaky. My friend texted me early (knowing the state I am likely in right now) and suggested a (quite literal) raincheck for lunch.
Does this mean that I’m weak… today? No. I may have to make smart decisions to keep myself safe and avoid likely falls and concussions, but this does not make me weak. I am still strong. It simply means that today my strength is manifest in my practice of good self-care. I can wobble and be strong by making smart decisions to take care of myself.
Challenges not Limitations
Each of you have something that makes life a challenge. Whether it is something physical, spiritual, emotional, or cognitive, we all have challenges. I don’t like the word “limitations”. I prefer to think I am not limited in any way. Instead, I have challenges that exercise my muscles to make me strong. It might mean different choices. Perhaps it means a “raincheck”. I may have to ask for assistance from my service dog or even a person. I am not limited. I simply have challenges. These challenges make me strong.
This post began with exposing something everyone already knows. We all “have stuff”. Your own “stuff” presents challenges, but those challenges make you strong.
This doesn’t mean that you may occasionally feel overwhelmed. It doesn’t mean that there is anything wrong with the fact that at times, you just want to give up. That’s where the rest of us come into the picture. We need each other. We need to support each other. We need to celebrate with each other. If you haven’t seen the now viral video of Miss Nigeria going bananas with genuine glee at the “win” of her friend Miss Jamaica, you have missed out. You can view it here.
I want to be the kind of support and help to YOU, that I don’t hesitate to respond with questions from people who follow my blog or who know about my work in the disABILITY community. I want to celebrate every win you have. I also want to assist when you do not win, and I want to stand in the gap for you when you simply need someone to care. Blogs, vlogs, online support groups, and social media platforms have become a valued network and access to “Miss Nigerias”.
Hey… I totally get feeling all alone on my own little island, crippled by my MIND about my own disABILITIES. It happens. We buckle, hole up, and lick our wounds. Friend, please don’t stay there. Look for the resources and help easily found in a vast array of fully accessible environments. Indeed, we all have “stuff”. We also need each other.
Gotta say, I’m so grateful for being late-deafened in 2019.
I realize much of the reason I am grateful is that I have access to a great number of “first world technology”. I “hear again” with a cochlear implant. I have apps that caption speakers if they are within 6-10 feet of me. My hearing aid and cochlear implant are bluetooth compatible so (for example) using the GPS in my car, Siri tells me where to go (ahem) in my own head and it doesn’t bother anyone else in the car.
I have super cool devices to clean, dry, and care for all my hearing assistive technology. I have volume controls, fire alarms with strobes, and captioning on my television. I speech read at about 45-47% accuracy (which is actually pretty high but I credit it to teaching others how to do so in workshops, etc.). I can make doctor appointments online, and my home phone (Google voice) sends me an email transcription of every message left. I text like a pro and rarely have to knuckle down and actually phone anyone. My calendar and alerts sinc with my Apple Watch so my whole wrist vibrates when I need a reminder. I can order online, bank online, and renew my service dog’s insurance online. I definitely live in the right day and time, in a first world country, where even “middle class” I enjoy a host of perks that make being late-deafened, not so very bad.
Do you know the #1 pet peeve that happens to be very low tech and low cost, is the fact that no one wants to use a microphone?
I do pretty well in groups of 10-15 or less, sitting around a table so that I can see everyone, and everyone is polite and speaks one at a time. Put me in a room with more people than that, or people sitting in rows and spread out, and I really struggle. I may get 50% of what is said. You might be thinking “what does that mean?”. Please allow me to clue you in.
50% doesn’t mean in a 40 minute presentation or workshop that I received and understood the first 20 minutes.
This means that I get very little take-away. If I’m hearing 50% of what is being said while it is being presented and spoken, I am actually missing much more than that because of lost comprehension. Think about it this way.
If I read aloud a paragraph to you and dropped 50% of the words randomly, would you understand ANY of the paragraph at all? Even if you are hearing 50% of the words, you’ve lost the context and have very little understanding of what I just read.
2. 50% means my frustration level is high and my fatigue has ruined me for the rest of the day.
If I could burn calories by struggling to hear, comprehend, and communicate effectively, I could eat whatever I want, whenever I want, and never work out for the rest of my life. When you tack on the fact that my primary issue is a balance disorder and not the hearing loss, when the latter contributes to fatigue this increases my chances for wobbles and for falls. I have left meetings where people refuse a microphone and seriously put myself in jeopardy the remainder of the day because my brain became mush.
3. 50% means more work for other people.
I work at a college and am a valued member of the psychology department in spite of my adjunct status. After meetings or workshops where I get my 50%, I have never EVER been turned down by colleagues after requesting a follow-up email with a copy of the PowerPoint they used, a summary of their talk with major points highlighted, and any pertinent questions asked by others (that I didn’t hear at all) and responses given. I work with good people. People who care, who are inclusive, and frankly are all about social justice issues like accessibility.
So… if people were simply using the freaking microphone:
My comprehension goes to 80-90%
I expend the same amount of energy a hearing-abled person expends to attend a meeting or workshop.
No one feels compelled to send me copious notes about what they just covered.
I am included… not just in the meeting, but because I will be hearing questions and responses from the floor. I will feel comfortable speaking myself because I know what is going on in the meeting.
Other people with “normal” hearing, actually hear better. Speakers who use microphones are more likely to face the room/audience, speak more clearly, and not cover their mouth or faces with hands, fliers, etc. (Tidwell, 2004).
Having experienced good hearing/comprehension environments, imagine my frustration when I cannot hear and there is a microphone available that someone refuses to use. I have had workshop speakers decline microphone use, college presidents and vice-presidents, and TFO constituents. I have experienced county executives, politicians, pastors, graduate and residency doctor/teachers refuse to use the microphone. From the perspective of someone with hearing loss, this hurts y’all. It also pisses me off. (Jus’ sayin’)
“My voice carries, so I’m not going to use this” (points to microphone).
“I walk around a lot so I’m not going to use the microphone. I have a loud voice” (Note: most microphones are mobile).
“Can everyone hear me? I have a big voice. I’m not going to use the microphone… because everyone can hear me, right?” (while ignoring my wildly gestured hand-waving negating their statement).
Folks, volume ≠ communicating well. Raising your voice (your volume level) distorts your voice (Ardon, 2019). If you use a microphone and use a normal tone and volume because the microphone is doing the work, your words are understood by more people. The quality of your speech improves when using a microphone. You aren’t having to remind yourself to “speak up” so the people in the back of the room can hear you.
This post isn’t about any frustration about not hearing well when a microphone is NOT present. (Although as I continue positive advocacy, I work to have more and more microphones available in meeting and workshop venues). I simply want to remind folks to use the microphone when it IS THERE and IS AVAILABLE. Not using it tells me that I don’t matter… that anyone with any level of hearing loss doesn’t matter. (NIDCD reports that 15% of all Americans over the age of 18 have hearing loss. That number goes way up if your audience is 40 years old and up) (NIDCD, 2019). Even in small meetings, the number of people who benefit from a microphone in use goes way up. Present are people with hearing loss, auditory processing issues, ADHD, and folks who do not speak English as their first language. Please… use the microphone.
For all of us who want to be included, thank you in advance.
My granddaughter Samantha Jean just turned two-years-old. Samantha is at the stage where she has opinions and expresses those opinions. These opinions vary from what she wants to wear today, to what she wants to eat, to what she wants to DO, and what she wants you to do. She is just full of opinions. She also is very independent already.
“I do it!” After caring for her a couple of weeks while mama was in the hospital having her baby brother (rather early), this phrase quickly made its way to “Samantha’s Favorite Words” list.
I had to learn to let her do it, even if I wasn’t happy with the results when she was finished. Thankfully, since she is only 2, I was able to distract her to “fix it” or wait until she moved on to another activity and straighten, organize, or re-do the activity to my satisfaction.
(Yeah. I’m a little OCD and a bit of a control freak!)
What I love about Samantha, is that unlike many two-year-olds, if she was NOT able to do something she rarely had a meltdown about it. I was amazed at the first time she asked me for “halp”, and graciously stepped aside to let me do it.
I heard these requests for “halp” for numerous things:
When trying to stick her head through an arm hole instead of the one designated for her – ahem – HEAD,
When trying to get blueberries to stay on her spoon,
When trying to safely navigate the steps on the back porch which were a bit too much for such short legs,
When her train rolled to where she couldn’t reach it underneath the buffet,
When trying to read a book,
When trying to get up on some of the furniture, (see photos)
Sometimes Samantha would ingeniously choose a way to do something differently so that she could stay independent in the activity. For example, if there was something for her nearby she could use as a means of boosting herself up on tall furniture, she might drag that toy or bench close to use it to navigate her destination without “halp”.
She cannot manage “Grandma” yet so she calls me “Geegay”. I figure she will get there so I think the latter is awfully darn CUTE. I loved hearing Samantha say, “HALP, Geegay!” throughout the day. She more often did things without assistance, but never hesitated to ask for help should she:
Figure out she really did need it to accomplish what she wanted to do.
Was too tired to find an accessible means to accomplish it on her own, or the effort wasn’t worth the “gain”.
I had to admit while living with her, I saw the lesson to be learned again and again.
Stubborn People with disABILITY
I realized the other day that I have lived with disABILITY longer than I have lived without. The feeling was strange since I had simply shouldered new challenges and practiced “keep on keepin’ on” while aging. People with disABILITY (congenital or acquired) often find that as they age, accommodations that were once enough to give them access to an activity or opportunity, no longer are enough. Perhaps even accessibility tools, electronics, devices, etc., may have once allowed you to be independent in a task but as you age you find those things are not enough to be completely independent.
My life with a disABILITY started at the age of 6 with a traumatic brain injury, broken bones, and destroyed hearing in the left ear. After a long recovery, I never felt like a person with a disABILITY until about the age of 18 when my hearing loss became bilaterally progressive. I eventually acquired Meniere’s disease (a vestibular disorder) and really began identifying as a person with a disABILITY at the age of 26 or 27.
I have a good friend who describes herself as “bilaterally hearing-impaired”. Because we are both currently training our third service dog and work at the same place, we often train together. One thing I love about hanging out with Jessica is that she always asks if she can do something for me. Whether it is to get the door for me, pick up something I’ve dropped, carry something for me, etc., she always asks first. She doesn’t assume I want her help, she thinks to ask first in the event her assumption I need it is unwanted or not needed.
Sometimes I say, “actually Finn has been working on door buttons, let us see if he will get this door open for us”. Perhaps the item I dropped is something my Golden puppy can safely work on his retrieve and get for me, so I will let her know that Finn and I have “got it handled” and no “halp” is needed. After training together for some time, Jessica once replied to my “no thanks we’ve got this” with a very thoughtful reminder.
“No problem. However, we know each other well enough now that I trust you to let me know when you need help and that you will ask for that help”.
The first time she interjected this reminder, I found myself thinking about it the rest of the day. Can you guess why? It is simple really. People with disABILITY can be pretty stubborn, and never ask for “halp” when they really need it. We can even earn the reputation of being ornery about our refusal; ungracious in both word and attitude.
In my early adult years of learning to live with deafness and balance issues, I adopted a rather unattractive and even dangerous attitude of “I am woman. Hear me roar!” This could be interpreted as, “I don’t need help. Leave me be. I’ve got this. Don’t you dare pity me!”
The only reason I can think of that I acted with such vehement, even arrogant refusal is that I didn’t want people to pity me. I also did not want them to think that I was UNable rather than differently-abled. I think that all changed for me when I realized how it made ME FEEL when I asked to assist someone who needed my “halp” and they refused. After realizing I felt “robbed” and even hurt when denied the opportunity to help someone that I cared about who obviously needed my “halp”, I started re-thinking my own stubborn refusals.
I have lived with the assistance of 3 service dogs now. Even so, there are things my canine partner cannot do for me, or cannot do SAFELY on my behalf. I have learned to ask for “halp”.
I have never, EVER been turned down. Even should I ask the most cantankerous-looking curmudgeon in the aisle at the grocery store to get the 32-ounce can of turnip greens on the bottom shelf because a) I can’t bend down and get it, and b) the circumference is to large for my Golden’s mouth, I have never been told NO when asking for “halp”. (Hey we love our turnip greens in this house! I lived in the South a loooooong time).
Solutions to World Problems
Surely a solution to the world’s problems is to simply be kind to others. We all know that isn’t going to be the norm, however. Still, individually we can do our part and hope (even pray) for a ripple effect.
In every way that YOU can, make a difference.
If someone needs it, “HALP” them. Do it with a smile and without conditions. Do so easily, readily, and without any need for acknowledgement. Be the kind of person who so naturally sees a need and meets that need that it becomes who you are and not what you do.
It is always good to ask. Never assume that someone who appears to need help, wants your help. Maybe they have some assistive device that will allow them to pick up that item without “halp”. They want to be independent.
Don’t be a stubborn jackass. If you need “halp”, ASK. If someone asks if they can “halp” and you simply need a few minutes to do it yourself, explain that graciously. Don’t become haughty and retaliate with angry words and threats about where you are gonna hit them with your cane. Don’t tell them what to do with their request to “halp”. (Ahem)
May I share something with you that you already know?
Even able-bodied people need “halp” sometimes. Whether it is assistance with a task, or a needed hug at a low moment, all of us need each other. The next time you need assistance for “halp”, just ASK already!
Even my two-year-old granddaughter will ask for my help when she knows she needs it. She even does so when she recognizes that she can do the task, but that it will get done quicker and with less effort if she simply asked for HALP.
Pogosyan (2018) provides multiple reasons why we should be willing to help and accept help from others. “Research has found many examples of how doing good, in ways big or small, not only feels good, but also does us good” (para. 2). So in closing, I would like to remind you (and yes myself as well) that disallowing someone to assist actually robs them of the benefit gained from that help.
Pogosyan goes on to explain that, “One reason behind the positive feelings associated with helping others is that being pro-social reinforces our sense of relatedness to others, thus helping us meet our most basic psychological needs” (Pogosyan, 2018, para. 1). In a very powerful way, it supports our need for EACH OTHER.
I’m starting to think this world is just a place for us to learn that we need each other more than we want to admit. – Richelle E. Goodrich
Our greatness has always come from people who expect nothing and take nothing for granted – folks who work hard for what they have, then reach back and help others after them. – Michelle Obama
A new school year is right around the corner. I love teaching psychology courses. I love teaching. I love students. I love Anne Arundel Community College. I have a great number of “loves”, am I right?
The biggest “love” (other than the guy in the picture with me – married 32 years now) is that I am in a place where numerous opportunities await. An over all “motto” on my campus is “Engagement Matters“. I know this sounds like I’m tooting my own horn, but I was doing “engagement matters” before “Engagement Matters”. This isn’t some special talent, skill, nor ego booster. I try to see… really SEE the students in my classes. Why?
I have been invisible in my pain and loneliness before.
Having just one person notice and tell me they cared made all the difference.
It is relatively easy to see people who are versions of “self”. I want to tell you a story that for me, was the catalyst for changing how I see my students. Many of our faculty offices at Anne Arundel Community College are shared. Several years ago, I was in the adjunct faculty office sitting in one of 5 desks. I usually get to know the other Psychology faculty, but this specific office is shared by other departments. To this day, I have no idea who this teacher was. I only know she taught history. A student was meeting with her. The student was sitting in an easily recognizable “defensive” position, just oozing aloofness and apathy about what she was hearing. It seemed she had done poorly on an exam and had met with this professor to see what kinds of extra credit were available. Unfortunately, this teacher was not really seeing her. Perhaps the student felt backed into a corner? Maybe an earlier excuse she had provided (that I had not heard) was shot down. All I know for sure was that she had given up trying to get the professor to cut her a break and instead protected herself with a belligerent, bored, and apathetic attitude. My class start time was approaching so I packed up my stuff and headed outside with Milo (my service dog) to give him one more potty break before class.
When I returned to the building, this student was sitting in an alcove crying her eyes out. I “saw” her, as did Milo-bear. He led me over to where she was sitting and I sat down next to her. Milo put his head on her knees. She looked up in surprise and then continued to “release heart pressure” as she gently stroked Milo’s head. I didn’t say a word. She had seen me in the faculty office. (It’s hard to miss a professor with a service dog). She didn’t say a word.
erm… Milo didn’t say a word (but was “speaking” volumes).
About 15 minutes later, she quietly said “thank you” and gathered her things and left. I grabbed my stuff and headed to the elevator, now fairly late to class.
“Sorry, sorry, SORRY” I chanted as I rushed into class out of breath. “Sorry, I’m late!”
My students looked up and smiled, putting their phones up that they had been using to take advantage of my tardiness. “Drew” (name changed) piped up and said, “Bob Burg, right?“. Another student explained, “Yup. We saw you with that student having a meltdown!”
I stood there a little bewildered trying to catch up with what they were saying. Another student (able to decipher the confused look on my face), added, “Yeah! Remember the meme you shared in class last time?”
In my Psych of Relationships class we had just covered communication and learning to take an interest in others – even total strangers, and WHY we should do so. I had just shared in the last class, a slide with this photo/meme:
I had steered our discussion towards seeing beyond the words. Seeing someone who is hurting can quite literally mean the difference between life and death. We discussed different opportunities we have had. Opportunities to take a few minutes to make a difference and to CARE. Sometimes a topic just “takes off” in class and numerous students shared how it felt for someone to take an authentic interest in them and to really SEE them. Through a “Poll Everywhere” activity, we took a quick class vote of who was currently going through something difficult and felt invisible and alone in their pain. Nearly 87% of the class signed in to say “this is me“.
The class looked around in astonishment. One student said, “Everyone in here looks happy!”
We have to look beyond a quick glance. Really SEE the whole person.
This time of year reminds me to make it my heart’s prayer and my default response to be the kind of person who really SEES other people. It only takes a few minutes to show someone you see them. By…
“We are not given a good life or a bad life. We are given a life. It’s up to us to make it good or bad.” (Devica Fernando)
I believe one of the most self-destructive things a person with disAbility can do is to compare themselves to other people. I have even heard people with disAbilities compare themselves to other people with disAbilities… seemingly weighing “who has it worse“. Y’all? I have done this myself. Believe you me – I get it.
I think people who live with chronic illness or disability do this for one of two reasons:
They are trying to remind themselves they are better off than “so-and-so”
They are trying to discount the perseverance and courage of another because there is “no way they can understand YOUR life” because you have things much worse.
Let me start with the first one.
If you have “stuff”… physical, emotional, and mental challenges, don’t ever compare yourself with someone else also struggling. This is especially dangerous if you end up invalidating your own difficulties. The life challenges you deal with are just as legitimate and real as those faced by other people.
Frankly? Every person you know is fighting a battle you may – or may not – know about. This is the reality of life. Those of us “dealing” with life’s challenges were not given a good life nor a bad life. In spite of what I’ve heard others bellyache, not even God is at fault for your “good or bad” life. As Ms. Fernando stated, “It’s up to US (emphasis added) to make it good or bad”.
So (temporary) pity parties are not allowed? Well of course they are allowed. They are also
You just can’t stay there wallowing in self-pity. If you believe in the power of “psyching yourself up”, simply do so by focusing on your own life and don’t compare yourself to others. It’s OK to not be OK. It’s not OK to think you should be OK, because compared to others you’ve got it pretty good. The struggle is real and we all have struggles.
Before I leave this point, allow me to just say that I am “born again” about sharing and caring with other people who live with chronic illness and disAbility. We can learn from each other. My greatest “teachers”, those who by example or explanation, coached me to try a different approach, a new assistive device or tool, or to adopt a new mindset to help me succeed.
The second point can be much harder to avoid. As a person with disAbility (late-deafened) and chronic illness (Meniere’s disease), I sit in meetings with my peers feeling frustrated when someone makes a really lame excuse for not doing something well or refusing to take on a responsibility. I think, “Well for love of cracker jacks, who goes around saying they couldn’t complete a task or responsibility because they are just to busy?” (Yes. I really think this LOL).
Who am I to say that someone without VISIBLE disAbility or chronic cannot use “busy-ness” as an excuse? Maybe they are dealing with something you do not know about. Maybe…
Their child has an unhealthy addiction.
They are scrambling to make room for their ailing mother who can no longer live alone.
Their most significant, personal relationship just imploded.
Their doctor wants to see them to re-take a medical test.
At the community college campus where I work, inclusion is the word of the day (and week, month, and year). Yet inclusion – includes – people who seemingly do not fit into a defined diversity group. Diversity implies all the ways we are different. I don’t know anyone breathing who isn’t different in some way. Inclusion, means to universally INCLUDE.
This past week I retired my 2nd service dog from Fidos For Freedom, Inc., specifically from working with me in the classroom at AACC. We started a major demolition and construction project this summer. Unfortunately, after working nearly 3 months on desensitization, Milo is unable to cope with the loud noises and “mini earthquakes” to focus on his job and assist me. I taught two classes this summer (Developmental Psych and Intro to Psych) and they were the hardest classes I have taught to date. I have had the assistance of a service dog in the classroom for 14 years! (Milo will continue as my partner in all other areas and is not retired full-time as of yet). Having to carry all of these assistive devices to work just to be independent in picking up things I’ve dropped or walking without wobbling, has been an emotional, mental, and physical challenge for me.
A couple of weeks ago during one of the breaks I offer (as it is a 4-hour class!), I ran into a colleague who teaches in a different department. I know her well enough that when I said, “Hey! How are you doing?” she answered honestly.
“My life is hell. This is the hardest summer session I have ever taught.”
I will admit my first thought was a flurry of reverse-prejudiced “OH BRUTHER” rationalizations.
I mean… she is healthy and athletic, and in her prime. She has tenure. She is well respected. Her expertise is valued. How is it that SHE is having the toughest summer? She doesn’t have any disAbilities or chronic illnesses! There I went with a silent “eye roll” and judgement simply because the things I was dealing with in adjusting without a partner were so much more IMPORTANT than anything she could bellyache about!
I immediately (mentally) slapped myself up side the head (though likely would have benefited from the real deal), and instead asked, “Well gee! What has been going on?”
Come to find out anything that COULD be going wrong in her life, was indeed going wrong. Her teen daughter was hospitalized and put in long-term care for depression. It came from out of nowhere and no one in the family had seen any warning signs. Early in the summer, she nearly lost her to suicide. Add to that long-term plumbing issues, car troubles, financial woes, and an internet stalker (I kid you not) rounded out the “list”.
Nope. This fellow teacher does not have any disabilities that I am aware of, nor any chronic illnesses. Yet, she too, has been struggling all summer and doing her best to cope. She, like me, chases down and hog-ties that professional smile to paste on right before entering a classroom. She is distracted and suffering from insomnia. She has cried many tears. Embracing true inclusion has taught me to recognize that her struggles are just as real as mine are. I love what Jordan (2011) said in the Diversity Journal: “Inclusion involves bringing together and harnessing these diverse forces and resources, in a way that is beneficial. Inclusion puts the concept and practice of diversity into action by creating an environment of involvement, respect, and connection—where the richness of ideas, backgrounds, and perspectives are harnessed to create business value.”
My colleague’s “stuff” looks different than my own “stuff”. It’s still STUFF. Encouraging and supporting everyone, benefits, well… EVERYONE. No one has everything going for them; a life without problems, fears, or struggles. However, everyone has something going for them.