I was interviewed recently for a hearing magazine and one of the questions that they asked me was, “what would you say the greatest challenge of being a deaf mother is?”.
The first thing that came to mind was last week.
I was sitting on the bench outside of Moxie’s class with Micah and Moxie’s new speech therapist. Moxie came out and climbed into my lap and the speech therapist said, “awwwww…!!!!!” I hadn’t heard anything to say “awwwww…!!!!!” about, so I asked, “what?”. He said that Moxie said, “Mommy!” – I asked Micah if he heard it and he said yes. “Yes, Moxie said, “Mommy!” She said it just now”.
And maybe my eyes filled with tears because I didn’t hear my little girl say “Mommy” for the first time.
It’s not easy talking about the challenges of being a deaf mother, living in a hearing and oral community.
Not easy, you see because I get so sick and tired of the ‘woe is life’ posts written by parents of kids with disabilities, I feel wretched when they are crying over the hearing aids, implants or ear tubes that their child needs. I know that I swing hard on the other side, like a pendulum that is whacked and connects with the ball and then swings harder from the force of impact. I don’t want to talk about the hard stuff because I don’t want parents to read what I say and only hear the challenging parts of what I am saying. I don’t want them talking about how difficult life is going to be for their deaf kid because – OH MY GOD! Hearing aids!
I simply don’t believe that anything is ever as cut and dry as we like or want it to be. The complexities of the deaf experience are not easily articulated, not least because like all experiences, it’s not one-dimensional. Being deaf is not this awful, horrible, bone-shuddering experience – but it’s not a total ride in the park either, especially if you live with hearing people, in a community that relies on telephones and oral speech.
Isolation
It’s hard, not least because you are isolated. Maybe I should use “I” statements here, since I’m really just talking about my own experience.
I am isolated. Being deaf is isolating. Think about it, and maybe even plug your ears at some point when you are in a conversation with friends. Look at their lips and try and follow what is being said. It’s just not easy, is it? It’s not their fault, it’s not my fault, it’s simply the way it is.
But it’s isolating. I can’t jump into conversations, I often lose the thread of what is being talked about. I get overwhelmed with trying to focus on what people are saying and end up spacing out which does nothing for my credibility as an interesting person who might make an interesting friend.
I have to ask people to repeat things 50 million times and that gets old, fast. I often don’t even know that I need to ask them to repeat something and that makes me look stupid, fast.
There is nothing quite like that particular brand of awkwardness that comes from responding to something incorrectly, and I’m talking about like, “hey, how are things on the farm, Meriah?” – “purple!“. Their faces have *wince* written all over it and that helps – I Â can at least laugh and point out the obvious, “oh, did I just say “purple” when you asked me how things are on the farm or something?”
And if they laugh too, it makes it all a little better, but there is no denying that fundamental fact: being deaf in a hearing community can be an experience in isolation.
Isolation: I try to cut through it. I am not consistent about my effort though… it goes in waves. I will attend something or other, try and participate, get completely fazed out and feel craptasticly DEAF by the end, like I just want to run home and cry and play on Facebook. Sometimes things end well, like I heard enough to connect and that makes everything enjoyable enough to want to repeat the experience.
Or not. Sometimes even if it’s enjoyable, I don’t want to repeat it – I get nervous about jinxing it, interaction being hard again, or I get nervous about the effort it takes to connect.
I feel tired before anything has even happened, and even while I want friends and I want to hang out with other women so bad that it sometimes literally drives me crazy, I just can’t face it all.
Being deaf is isolating
****
I’ve often worried about not being able to hear the kids in a variety of contexts. I worry also about not being able to hear what is said TO my kids. I worry about someone saying something mean to one of my children and my standing Right.There. with some vacant smile on my face, looking at the trees, unaware and clueless. And then if my kid cries (with tears or with a hurting heart), it will be up to my child to tell me what happened, and I absolutely hate that.
Oh my God, do I hate that.
So I try and focus on not worrying – I mean that hasn’t even happened (to my knowledge) and I have enough that has happened to keep me busy.
The Challenges of Being a Deaf Mother
Maybe that should be, “The Challenges of Being a Deaf Mother Who Chooses to Live Off the Grid.”
Because, let’s see. We can’t get a landline for a telephone (- they literally won’t come out here to put in the poles), video phones fall under that umbrella. I can use Facetime, yes, but only at certain times of the day (when others in our valley are not downloading or streaming videos!). But how many dental offices do business with you using Facetime?! Right. I need to use the cellphone and that’s almost exactly like those old Saturday Night Live videos of Al Franken searching for access with the antennae on his head. It’s so ridiculously and comically absurdly awful that IN REAL LIFE I feel like a skit from Candid Camera.
In a nutshell: the nitty-gritty knuckle-crackin’ stuff of being a parent who gets things done is head-bashingly hard for me.
In fact, it is to “hard” what crawling up Kilamanjaro on your knees is – which is to say: it can be done and it’s no fun. Only if you do the Kilamanjaro one, you’ll get a lot of recognition – for me and for others like me, you get a dental appointment. If you are lucky.
Sometimes I wonder how much of all this is just me.
If I was a more “together” kind of person, would it be easier? I slept with all of my kids because I couldn’t hear them cry – I would wake up from the vibration of their crying. Deaf people asked me why I didn’t get a video monitor with a bed shaking alarm – and honestly, I never even thought such a thing existed. So there you go; it doesn’t have to be the (perhaps more difficult) way that I’ve made it.
I could have had a video monitor and I could have rigged it to a bed shaking alarm. I could rig a phone up some how (how???) and get access without it being what it is. I could get an interpreter for everything, walk around like a boss with a posse. Make my family sign in order to communicate with me. Forget about being so oral – it feels stupid anyway after you know someone has repeated something to you enough times to make their eyes twitch.
****
I’m at the point in the story in which I want to start stacking the positive.
I mean, my fingers are reaching for the keys in a fierce way – but for once, I just don’t want this post to be about finding the positive, about the glories of being deaf, about how great it is to live in a world of silence.
And by not writing about that right now, I’m not saying it’s not true; it is. I do love my silent world, I Â love how it feels soft and muted, like a hazy dream with beautiful colours. I like being able to choose to hear and I like being able to switch from one blended-watercolour-world to a sharp, crisp, focused one just by putting in and turning on my hearing aids. And I want parents of kids with disabilities to remember that – I went them to balance that with what I’m saying about the isolation.
It’s not as cut and dried as we might want it to be: as I’ve said, being deaf is not a one-dimensional experience.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
It’s such an easy thing to take for granted, I would have never thought of how it would affect every. single. aspect of day to day living. Meriah,you are truly amazing and adorable!
“adorable”!! LOL – I think I love being called that!!! haha!
The videophone can be programmed into your computer with a webcam and you can have access to interpreters 24/7. Highly recommended. Best of everything and may everybody have a little Moxie in their lives! If you need more information, look up Sorenson, Purple, or Zicomm.
Thanks! Do I need to have a phone line though? Can it be through the internet? Do you know – ? Sorry, don’t mean to bug you with questions but that would be a miracle, if I could get that through the internet…
This is a really beautiful post. It annoys me that I feel a responsibility to the entire disability advocacy movement be upbeat and chipper all the time too. Sometimes you just want to discuss a challenge without it undermining all the positive stuff that happens most of the time.
I am a deaf mom to adult children. There were many challenges, unable to make Dr. appointments, struggling on the phone when the school called about something. Now I am unable to hear at all on the phone and rely on text messaging and Facebook to communicate. So many feelings of missing so much of what was going on, what was being said. Still today it is not easy but I try each day not to let being deaf bring me to despair…
xoxoxo love to you.
Thank you for this amazing post, that has made me consider yet another layer of complexity to our lives. Someone flagged your blog up for me as part of #TeamT21 and I have you firmly bookmarked now. Much love Hayley
🙂 – thanks
What about IP relay? I have CAPD and I use that when my ears decide to stop working.
It’s so sad you didn’t hear moxie saying Mommy for the first time! It’s a terrible shame. It’s a crime. There should be a law against it. A law that states that every mom, including deaf moms, are entitled to hear it say to them. At least once.
Thank you for writing a post about how hard it is from time to time. The isolation, the tiredness, all the nitty-gritty knuckle-crackin’ stuff. And the always looking for a positive note to end on…
This post makes you a lot more real and human and loveable (to me anyway). And that great picture, with you and Moxie and Dora (is she called Dora too in your nick of the woods?) all going: Aaaaaaaah!
love you
Els from Amsterdam
thank you! – I wanted to say that I don’t think I’d have been so sad about not hearing her say “mommy” had the way she talks been similar to most kids. You see, for most kids, they start talking and that’s it – it’s a GO. But for Moxie, she’ll say one word and then she won’t say it again for a really, really long time. She’s not saying “mommy” again and I think it might be a while before she does. I was sad to have missed that window but I know it will come back. Fingers crossed anyway.
xoxo
PS I really want to visit Amsterdam
if you don’t mind cramping on two sofa’s… welcome!
A wonderful post on the complexities of being a deaf mother, written beautifully and may I just say what a beautiful family you have! x
I had a long comment here but I lost it! In any case, thanks for writing this and putting into words an experience that I difficult for me to write about.
are you deaf too?
Yes, we’ve emailed with each other before! 🙂 I commented on your blog awhile back, can’t remember which post…
yes! I remember!! I thought your name looked familiar!
How about being a youngest child age 5 to make phone calls and all adult decisions before todays technology? I was age 5 to make my mother’s and myself and 3 other siblings decisions and appointments. I know I am not the only person on earth to do this but everyone talks about being a single mom or a child of deaf parents. What about a child of a single mom and being the youngest and the best interpreter and having to make all appointments and interpreting for everyone at age 5? I had childhood illnesses that made me stay at home and make all phone calls and appointments for myself and family members. I never was allowed to be the 5 year old the 10 year old let alone the 18 year old everyone else was. I had a single mother and 3 other siblings to look for me for the answers and be the one to communicate. I am married for 24 years with 2 kids of my own and everyone still looks at me for advice, financial help and answers. I am tired I am done being a voice a mother at 5 and etc. Is that so wrong? Where are the the voices of children like me? I totally understand the ones with deafness or dare I say a disability had it hard. Did you at age 5 answer or stand up for your mother? Answer questions for 5 people and have understanding about any of it? Did you ever fit in at school? l went to an all hearing public school but I was the only kid to have a deaf mom and was daily teased by this and made an outcast. I remember my mom saying how everyone at school was the same but everyone at home was different. I would have welcomed 500 students being the same rather than being 1 different at home. No my mother didn’t have her parents or siblings learn to sign but she constantly reminds me she had hundreds of friends that were like her at school and she grew up with them and still speaks to them but her family couldn’t be bothered to learn to speak to her. But I tried my whole life to have anyone understand deafness or learn to speak the language and not 1 friend in life that I know today that can nor is a friend to me. I know hard of hearing people think they had it hard because their siblings can’t communicate their own families can’t either. But as a child of a deaf parent, everyone sees we can sign and communicate so we are responsible. I was told from age 5 it’s my problem my mother . What about my 5 year old childhood let alone my teenage years? I didn’t have that my mother was going through menopause before I menustrated but I was to know her problems before I even knew what it was? I can relate to kids of deaf parents but where are the kids of a single parent. We didn’t have a father making money and had to translate at social services well before I was 10. I still don’t know how all the system works I never needed it.But as a deaf single mom and her 10 yr old interpreting they looked as both of us as retards and we needed it. That is pathetic. I grew up in the 70’s and 80’s and I am sure things have changed. But my need to make sure everyone is taken care of and my needs are last is tiresome. I need a childhood a teenage outage a young adult adventure that I have never done since a child of a single deaf mother is never reconizied or acknowledged My job is never done or appreciated. I would never want any different I do thank my mother for being dad and mom but I hate my family for not being there for my mom or us kids and especially dad and I don’t even like to say Dad because that title isn’t entitled. He is a loser to walk away from my mother/father my everything and let his children all under age 9 to fend for ourselves and take on adult responsibilities with no remorse! he is not a father nor a Dad! I just want to see more posts of struggling children of single moms since there are 2 stories. Yes I applaud all single moms! but I don’t think you actually know the real and factual struggle it is on the hearing children to take on the responsibilties of being an adult well before they need to be. maybe not today but how about the ones with not today’s technology and the situation they are still in?
I absolutely agree with you. I think it’s wrong to have children take on those roles, full stop. I am really sorry that happened to you.