Sunday, February 24, 2013

Disconnection

Reading Mali's Infertility and Shame post(I suggest you to read her post before reading this otherwise you'd get lost), here, so many things were re-opened through my memories, my thinking process and emotions.  

" But the judgements that are made about our inability to conceive or carry to term seem more accusatory, and touch us more deeply, right in the heart of who we think we are, or we are supposed to be."

Supposed to be.   

That caused a flashback of what I had experienced throughout my childhood to young adulthood.


Instead of struggling with infertility, I struggled with deafness.

Not deafness, itself, but society's medical worldview of deafness.  

I have heard and read so many words to describe me,

Hearing Impaired.  

Deaf-mute

Disabled

Deaf-dumb

Oral failure

Handicapped

And more, even horrible words that I will not include.     From those words, I had believed myself:

Broken.   

Unfit.  

Unwanted.

From that belief, reinforced repeatedly with doctors, audiologists, teachers and family, I felt ashamed.   I  was ashamed of my deafness, always different from everyone.  Something to be embarrassed about, because I could not hear.  I repeatedly felt like a failure when I could not comprehend the speaking person.   Broken- something to be fixed.   I had gone through years of speech therapy, learning to identity vowels and spoken words;  years and years.  When it was realized that I could not understand many spoken words, it was reinforced into me:

I failed. I failed the society's expectations of normal.  I was supposed to be hearing and I failed. No matter that I was born deaf or that I became deaf as a baby, I was a failure from there.  

Something not good enough to be accepted in society-

To add, I'd like to use Mali's quote, referring to Brene Brown's lecture about infertility: "As she says, we are wired for connection.  So we feel shame when we are different from others, when we are not connected, when we can’t do what is considered to be normal."

That was exactly what I had felt for decades growing up. I had a grasp that I was supposed to be hearing, yet I was also aware of being different. That led to feelings of disconnection, detachment, alienation, no matter how hard I tried so hard to be like everyone. I felt ashamed of being deaf, not understanding it was an aspect of me. All I knew was I was remarkably different, yet I couldn't find a way to connect to everyone. It was like grabbing at air in darkness, wondering if I'd ever find a hand in mine, leading me out of darkness.

Furthermore, after learning SEE (Signing Exact English, a sign system that represent English language in gestures) at age of 11 or 12, that gave me somewhat a connection to communication, opening a pinhole into the visual world. Yet, I was self-conscious, having folks gawk at me, as if I had a second head.  I was thankful for the sign language, yes, but I was very conscious of how people reacted to me-

"She has to be retarded, she is flapping her hands."

"Is she crazy, why is she waving hands- can't she talk?"

So I hid.  I kept my signing to friends, not much out in public.  Even when friends signing at a restaurant caused me to feel anxious, ashamed of our difference, the reminder that we were broken.  

                                     **********************************************


It was only when I became 28 years old, I started to work with deaf consumers who use ASL (American Sign Language). They were intellectual disabled, some with Downs syndrome, some who had survived through decades of being institutionalized at hospitals for mental ill, just because they were deaf, and some with additional disabilities (diabetes, cerebral palsy, blindness, borderline intelligence, and/or mental disorders.)   From them, I learned something valuable, something I would never forget.

Deafness is not a disability to them.  Deafness is not a handicap to them.  It's just a part of who they are; how could they know differently?   This didn't stop them from being who they are to be; they didn't have to meet any expectations-  they had their own challenges-  deafness?  Phhshh..  that's not a challenge, that's PART of who they are.  They weren't broken.  They weren't unfit.  They are a community, laughing with each other, loving each other, arguing with each other, all in flying hands in grace and passion.  Sign language to them is a gift of language after years or even decades of no communication.   

That was a breakthrough for me.  

From there, I started to explore my Deafness. I started picking up ASL, finding it much easier, as natural to me.  I visited friends at Gallaudet University (the university for Deaf in Washington, D.C); I got opportunities to read memoirs of Deaf people, such as Everyone Here Spoke Sign LanguageBUG, and Seeds of Disquiet, and more... I also saw hundreds of Deaf folks signing in open, so animated. I never had seen so many in one place, hundreds, no, THOUSANDS!  

No one was hiding, no one was trying to hush each other.  No one was saying you're handicapped, or that you're broken.  

It was world-shattering for me.    I wasn't alone anymore.    I started to feel confident in myself, and I started more to learn about myself, to embrace this part of me, that had been hidden, but no longer.   


The Deaf community worldwide from youtube

I became an advocate for communication, especially with what I have seen with the Deaf consumers and friends I worked with-   so many families had put them aside all because they were deaf- "if they can't speak, they are not desired."   I saw children close to families that sign to them.   I saw children close to families who go out of their way to make sure there's communication between them, not putting all the burden on the child.  Hillary Clinton is right when she refers to raising children from her book, "It takes a Village," as in using ALL tools, from parents, to teachers, to ways of communication, to awareness of variety of enriching resources, not limited to doctors and audiologists only.  That awareness became important to me here, to see that no children should be reminded that they are broken or that they are unfit all because they are born different.  

I am not broken at all.  With that in mind, I embraced the whole of myself, as a woman, Deaf, survivor of trauma. No longer do labels define me anymore.   

                               **************************************************

  Experiencing going in and out of doctors' office in late 2011, I was starting to feel something familiar to me. I didn't want to feel that, so I kept myself busy, denying it all, both infertility and the feelings-that-shall-not-be-named.  

When realizing in January 2012, that I cannot have children at all, I had to face the familiar feelings..


Broken.   

Shame. 

Singled out.

Shame of being broken, being different...   again. 

How bitter, yet familiar it tasted in my mouth.  


Mali's quote "So it makes complete and utter sense that we want to feel as if we belong, to connect to other people.  It also explains why we blog.  Because we want to speak to other people in our situation, we want to feel normal, and we want to help others feel normal." (she nailed it!)

I blog for many reasons, including this reason:  to connect with other bloggers/readers who are in the same boat, and to feel normal again. However, there's one main reason- I want to tell you, dear readers,  that there is a Deaf infertile woman, me *raising hand in air* - writing about her experiences.  I am hoping to reach out to other Deaf women who may struggle through the same experience:  the horrible, unthinkable infertility, in its many versions (PCOS, cancer, endometriosis, many others).  I'm hoping in many ways this would help readers and even me, to the point that we are not alone, even when we have different methods of communications, cultures, and worldviews. I might sound selfish for saying this, but feeling ashamed, feeling disconnected is somewhat what I was accustomed to, and I don't want to continue experiencing this.    

Hopefully with writing as a Deaf woman living with CNBC (childlessness not by choice/infertility) and struggling with finding herself again in the new world, would help publicize that even infertility is not something to be hidden even in the Deaf community, and something not to be ashamed, but to knit closer the circle of us, even with ones with flying hands.  

3 comments:

  1. I had time to view the link you put in FB about the deaf community/culture before I deactivated my profile and after that I also viewed some other links concerning the topic and I did wonder about what you wrote here - about the disconnection you may have felt. It must've been quite a journey for you to finally finding your place to belong and I salute you for sharing you stories here.

    I hope you'll get to meet many more people through this blog. :-) For me, blogging has saved my sanity - whether it's in my main regular blog or my infertility blog. :-)

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  2. Um. I'd just like to point out that it wasn't Pamela who wrote that post, it was me! I'm glad my post resonated with you. Because I'm not sure if I included it in the end, but as I was writing it I felt a connection with everyone who had felt different, who had feared and felt shame for being different. But different doesn't mean bad, or less worthy. It means more interesting!

    And I'm really proud that you are part of our community, a valued member with a unique perspective. I wish I could see your beautiful flying hands!

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    Replies
    1. Thanks for the head up,Mali! I fixed what was needed to be corrected.:)

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