When a person says that they’d just love to have my experience I just want to say, “Really? You want the frequent headaches, the ringing sound in your head that’s not really there but you’re beyond exhausted like all the time that at this point being tired is just a continuous state of being for you, and no amount of sleep can alleviate your constant dread of social situations and being in noisy places and second guessing yourself ALL THE TIME even when you know there’s no reason to but its just that being deaf is like having a phantom sense and you’re always wondering if there’s a sound there or if something’s happening here and you’re not hearing it but no worries because someone will be there to make you feel like a total piece shit for not hearing them speaking to you?”
Let me know how that goes as you realize it’s not a simple matter of plugging up your ears.
I was up at 3 in the morning after a heavy conversation with my best, pouring forth my unfiltered thoughts and gutting my heart on paper the stream of consciousness of a deaf, black male who has to balance those two predominant spheres (along with being queer) while battling the never ending introspective thoughts that constantly make me question my self worth and whether or not my friends are REALLY my friends, or just people who pity me and are being polite while I misread all of their cues and tones, all the while addressing the fact that I have avoided confronting the real issue that my disability is an obstacle when it comes to building genuine (ergo, romantic) relationships, while people won’t actually SAY it….we all know it’s there, and it’s great that I’m like this “AMAZINGWONDERFULGENUINETALENTEDFUNNY” guy, but I’m still “too deaf,” “too black,” “too intimidating.” And internalizing THIS message, this stream of consciousness, in a way that people cannot look at me and go, “Nah, you’re being a #paranoidminority” or “you’re #attentionseeking and #playingthevictim” because we are often taught that our experiences are invalid. That it’s all in our heads. But it’s me holding up a portrait of myself that contains fragments belonging to different places while not fully belonging anywhere.
I’m not asking for pity or your opinion. There isn’t a right or wrong. It’s just me. My experiences as the results of biology and fucked up circumstances and being a clusterfuck of star stuff.
It disgusts me how many adults in my life have tried to raise me as a hearing person. It’s their secret way of saying, “No. We don’t accept this.” And to think how I’m not the only one. It happens to all of us, everyone, in different ways. And not just deaf and hard of hearing people.
It’s funny how everybody wants to talk about mental illness and depression, but hardly anybody is willing to engage in a conversation upon which we discuss how deafness and/or central auditory processing disorder are oftentimes a huge contributor to anxiety and depression on so many levels. Not only are you constantly navigating an isolating world where you cannot always rely on your ears or your brain to process sound, but you have to understand how other people communicate, worry about accommodations and accessibility, strain yourself physically and mentally in order to mainstream, deal with numerous embarrassing situations that require a thicker skin than most, combat audism in your community, oftentimes family, friends, and coworkers, miss out on many activities and conversations, and struggle every day with accepting your limitations. There millions of us all over the world. Why are we not talking about this?
On May 3, 2021, I joined Katie Booth, author of The Invention of Miracles: Alexander Graham Bell’s Quest to End Deafness (Simon & Schuster, 2021) in a virtual conversation about deafness, sign language, and Bell’s oralist legacy, hosted by the Massachusetts Historical Society. The recording is now available, enjoy!
Sorry that I haven’t been updating my blog for a while. These last 7 months I have been going through and preparing for a life changing experience. This Deaf girl is going to become……
A DEAF MUM!!!
I have a baby boy due in just over 10 weeks, and I am so excited yet nervous to become a mum. I have so many questions and choices to make going around in my head. Choices such as bottle Vs breast feeding, what do I want in my birth plan. But one main question that stands out is, will my little boy be deaf like his mummy or hearing like his daddy? And the one answer I do know to that question is that I will love him whole heartily, and purely.
I do love the idea of having a deaf child, that I can shared my knowledge of my deafness, encourage integration to both Deaf and hearing world, and I feel there would be more of a connection between me and my deaf child. I’m not saying I wouldn’t be able to connect with a hearing child, but it would be different. I’m finding hard to put into writing what this connection is. We connect with people, but having a large ‘something’ in common can form a unique connection, and that can be same race, religion, disability for example… I hope I make sense! But then I wonder should I be wanting a deaf child, and to see them grow in a world that isn’t as accepting, accommodating, or easy to be in. I must remind myself, yes it can be hard being deaf, but I have had many great experiences and met many great people. The hardship I’ve faced has made me the person I am today, and because of that I know I would be a great mummy to a little deaf boy.
I can imagine that some hearing people would be like ‘why would you wish for a child that’s ‘disabled’?’, and it’s a shame because deafness is so much more than a disability. We have history, culture, and most importantly we have a beautiful visual language. Which I’m also very happy to say that my partner, who is hearing, is learning the basics of BSL (British Sign Language). And I want our child to grow up with both oral and signing skills, even if he is hearing.
Either way, if our baby is happy and healthy, then I’m a happy mummy. I cannot wait to start this new chapter in my life.
Deaf – Hearing romantic relationship – my own experience
You know, there was a time that I believed I would meet a deaf man, and have deaf children. Fast forward a few years and I’m happily in love with a hearing man. The reason I believed I would end up with a deaf man because I thought it would be easier. Easier to meet, easier to communicate, being deaf would be something in common. Being deaf and dating within the hearing world has it challenges, and full of disappointment. Especially for me I have many people who stopped talking to me when they learned I was deaf, or used me to satisfy their curiosity of meeting/dating a deaf girl. So naturally I started to want to be with a deaf man, and that was a challenge in itself. I’m not 100% fluent in sign language, or very involved in the wider deaf community. I’m deaf, but very much integrated in the hearing world due to my parents’ choice.
Through online dating I came across someone who caught my eye, and decided to ‘like’ his profile rather than private message to say hello. I was worried that he wouldn’t reply after looking through my profile, I mentioned that I am deaf. I got more messages from guys when I didn’t disclosed my deafness…. Online dating is window shopping. We want the pretty things, not the imperfect that’s on the ‘for sale’ shelf. So I pretty much stopped message guys first and just like their profile which basically sends a notification to them saying ‘hey, this girl likes the look of you’. He messaged me back…. God this never happened before! Usually I have messages from sleazy guys but not from someone that I was interested in. My first thought was ‘I bet he not read my profile, and just thought what a pretty face’ and would stop messaging me when he learns that I am deaf. Boy, was I wrong!? He thought it was ‘interesting’ and wanted to know more.
After messaging each other for a few weeks, we eventually had our first date. I was very anxious, total opposite to him. I had the usual first date anxiety: what if I’m not attracted to him, or him to me, or we didn’t connect. On top of that I had my ‘deaf anxiety’; will I understand him? What if he mumbles? What if I mispronounces words? And the truth is I did struggle to hear him but luckily he had really clear lip patterns, which made it easier to lip read. I thought he spoke posh!
The first time I stayed over, I slept in my hearing aid. Which fellow deafies will know is rather uncomfortable. I slept in them because I didn’t want to take them out in front of him, they can get gunky at times and there’s an element of vulnerability when I take out my hearing and be in completed silence. Also hearing people do have a habit of talking to you, after you’ve taken them out and everyone feels stupid as result of this. Plus we tend to lay in the dark talking, till we fall asleep. Then there the question of ‘intimacy’ and the debate of hearing aids in or out. Hearing aids in equals amplified breathing, feedback and whistling, and hearing aids out equal no verbal communication. And first time sleeping with someone does require some kind of verbal directions.
Then there the meeting of his family and friends, who are all hearing and most likely never really came across a deaf person or have had the opportunity to learn any deaf awareness. Great bunch of people, minimal deaf awareness. Especially in group settings, they talk to me without getting my attention so I’m not aware that they’re talking to me, mumbling, speaking quietly to name a few. Being a deaf person and like all deaf people, we adapted or we pretended we knew what was going on.
Fast forward 16 months and we’re living together.
I can lip read him clearly, no little to no issues. Remember lip reading is mainly guesswork. I now go to bed with 1 hearing aid in, and when he starts snoring. I know he’s asleep and the hearing aid comes out. Over time deaf awareness amongst friends and family increased due to spending time around a deaf person, me.
Deaf hearing relationships has its challenges, but they can be overcome. This is down to good clear communication and adapting to each other. He wasn’t deaf aware when we met but after getting to know each and talking about how my deafness affects me, and what support I need. He became much more deaf aware, and more than me sometimes. I’m forever talking to him when he’s in the other room or going upstairs, and then I don’t understand the response. I can’t blame him for that. I need to practice what I preach. He makes me aware if I’m saying something incorrectly, and helps me to correct it. This sometime makes us laugh. Sometimes we misunderstand each other, but we always talk it out. Being deaf is a communication barrier in itself, both partners need to be understanding and respectful of this. Not to be impatient or get too frustrated if not being understood.
There will be a time when he will be a hearing person in a deaf world, and the shoe will be on the other foot.
I’m grateful that he is open to learning sign language and has learned a few signs. It warms my heart when he tells me he loves me in British sign language (BSL), it means more than saying it verbally. It doesn’t mean he love me more or less, in whatever way he says I love you, but in BSL to me it means acceptance. It means I love the deaf you. More importantly when we have children there is a strong likelihood that we will have a deaf child (I really hope so) and our child will be brought up both orally and using sign language. I want my children to be able to fluidly move between both worlds. Something that I didn’t have the chance to do.
Overall I am very lucky to have found someone who completes me.
I follow a lot of deaf social media groups on Facebook, and sometime I feel myself getting frustrated. We rally together and champion for more deaf awareness, more acceptance within the hearing community, and rightly so we should. But I feel that we’ve become keyboard warriors, we moan to our d/Deaf peers about the issues we face. Moaning to each other changes nothing within the hearing community. When we face a barrier, we need to challenge it there and then. For example if we don’t understand someone and they get fed up saying ‘never mind!’ It’s hurtful when that happens. We need to tell the person saying that when they say it, not 2 hours or 4 days later to our d/Deaf peers. Also talking to that person there and then will enable them to learn, understand and become more deaf aware. But we need to understand that we cannot accept that person to become 100% deaf aware straight away, when we educate them about something. Learning and changing behaviour/habit takes time. We may have to remind them twice or even 100 times. We shouldn’t write them off straight away as inconsiderate hearing people. This is something we need to change within ourselves, especially if we want other to change. All relationships is a two way street.
While writing this I am aware that not everyone has the confidence to challenge people there and then, but every time we face a barrier and not challenge it. It will keep chipping away at the confidence in our ability to navigate the hearing world, and the more we challenge these barriers, the more confident we will become.
We need to be warriors on the streets, not behind a keyboard.
I’ve been thinking about deaf cubs and why I keep putting it off? I came to the conclusion that, I feel that I’m not deaf enough. Now! What does that mean? It is because I don’t wear a cochlear implant, not 100% fluent in BSL or BSL isn’t my first language, or that I grew up in an hearing family not a deaf one. I explored where has this come from, and this has come from my perception of the deaf community and its culture. Growing up, the deaf community, I feel has been isolated to those who grew up in deaf families and BSL is the first language. Now time and technology has opened up the community to more people. After all deaf people come from all different backgrounds; some are born deaf, some become deaf in later life, some speak/sign/lip read, some are born into deaf culture and some are not, and you can be a part of the deaf community and still be hearing…
I have met many people feeling the same thing…
I need to ignore these perceptions of mine and focus on the positive… The deaf clubs are welcoming, and inclusive (most of the time), I can use sign language, and yes, it is not fluent but I got to start somewhere. Also I am Deaf… just like everyone within the deaf community. Only I have my own journey/story to how I gained my Deaf identity.
About 3 weeks ago I had a really really bad ear infection, and still haven’t got the hearing I had back! What makes it harder is that the ear infection was in my good ear. I’ve got both hearing aids in but doesn’t make much of difference, other than helping with my balance.
I coped rather well, having to rely on my worst ear which has 95Db loss, but I am getting tired and fed up now. Really fed up!
Even more at work, and to be honest it is started to knock my confidence I have in myself as a worker. I feel like i’m a burden, and I’m not functioning to my best ability. Previously I could just about managed the phones but now I am not using phones which I feel hampers my work as I use phone a lot. I know that my colleagues are understanding, but I still cant help feeling inadequate. Every time the phone rings, it reminds me what I cant do. Hence the knock on the confidence.
I should focus on what my strengths are and what I can do instead…. but it is hard!
Recently my old thoughts have snuck back….. “If only I was hearing”
I am proud of my deafness and what I have achieved, but the old insecurities are sneaking in. I’m awareness this is a result of me being fed up!!! Cant wait to get the hearing I had previously come back.
I am so excited to head back to university to continue my development of sign language; Starting Level 3 in January.
Developing my skills and knowledge surrounding British Sign Language is important to me; It is a part of my Deaf Identity. It is about becoming comfortable within my D/deaf hood.
If I could go back in time and meet the 14 year old me, there’s so much I want to say. That girl I was, I was in pain, constant sadness, I didn’t know who I was or what I couldn’t be. There were times I would go to bed wishing that I wouldn’t wake up.
1/ You’re not the failure you think you are. You can achieve anything you want to do.
2/ You are surrounded by people that love and care about you. You cant feel it because you wont let yourself.
3/ Being deaf is not that bad, it may hurt a lot but it’ll be worth worth it when you’re older.
4/ Being deaf will become a big part of you are, and you will love it. You will love it all; the language, the culture and yourself.
5/ if you don’t wake up tomorrow, you won’t know what tomorrow brings. I never had a positive deaf role model,and would have benefit greatly from it. I may have achieve self acceptance early. But these things happen for a reason…..
I pretty much lost all hearing in my left ear, to the point that the hearing aid doesn’t really help that much. I still wear my hearing aid as I find comfort in wearing it, and yet at the same time it reminds me how much it hurts to lose my hearing. It hurts so much but I’ve come to appreciate the hearing I do have in my right ear.
I need to stop wearing that hearing aid because it’s not good for me emotionally and mentally. The hearing is gone and I need to accept that and move forward. Wearing the aid will not enable me to move forward.
I need to incorporate non hearing aids days and increase till I stop it as I’m not ready to stop it completely just yet.
One day I will stop wearing but I cannot see when.
Well I’ve been using one hearing aid the past couple of weeks, and it is easy to listen without all the useless noise and that is hard for me to admit. But I have been missing wearing it: the sensation of wearing it and the noise. I constantly feel that there is a part of me is missing - I don’t feel whole at the moment. Every time I look in the mirror and see my ears I am reminded that one is broken. I used to feel broken growing up with deafness, and then I became whole in myself accepting my deaf identity. Now I feel that has been taken away from me. This is strange thing to be feeling because I was deaf before and after, so why do I feel like this?
I have on occasions put my hearing aid in as I find I can slightly hear isolated noise, so I use it to listen to music via my hear hooks.(loudly might I add). When I take it back out, I miss it even more. I could leave it out 100% of the time, but I don’t feel strong enough to resist. I would miss it less and less over time if I didn’t wear it, I want to wear. I want to hear the useless noise, it makes me feel like it’s still working and hasn’t given up haha!!
Overall it sucks! and at times I’m struggling! I don’t verbalize this to the people, but at times I’m not okay! I find it easier to smile and say everything is okay.
They say time is a great healer, but how much time do I need? How long is acceptable?
I’m truly blessed to be around such supportive people! I’ve been a lot stronger today, picking myself up and moving forward. After all there’s nothing else I can do! However I feel I have gone back to my default mode of saying i’m okay so I need to ask myself am I truly okay…..
Emotionally I feel more stable today (the way I like it!) However I am absolutely knackered, so fucking tired it’s unreal!! Having one hearing aid is hard work, I feel like i’m on high alert, hearing everything through my one semi-good ear and trying not to miss anything! It’s weird I’m trying to listen to everything, taking it all in but at the same time I get a sense of sounds just flowing through me not making any sense and I just ignore it.
Being deaf I always carry the fear with me that people will give up on me, and I believe this plays a huge part in the way I form relationships. Especially with men, I don’t want to get attach to them in a way that goes beyond friendship. After all I don’t want to fall in love and not be good enough for them or they give up on me of my hearing continues to get worse. So I ensure that I don’t put myself in a difficult position. Sometimes this feeling of fear can be over whelming then I feel the need to push people away.
Fear is a horrible feeling to be living with, but I wont let it beat me :)
Overall I’m just really tired, and need to ride this through. Go through shit and come out smelling of roses!
Well, today has been a fun day! Been to see my consultant today for my 6 monthly check up. (Those who read my blog post regularly would know I've had 2 operation and face further hearing loss.) At my last check up last year everything was fine and things were looking promising, but not this time round. There have been further hearing loss, which was a blow! I actually thought I was lucky for a change! They want me to try and adjust to using one hearing aid. For me this will be hard as already feel like I’m missing a limb.
I know I’ve always said that I would be fine if I were to lose more of my hearing, but it doesn’t mean it need to be fun! I still find it hard, I get full of fear and anxiety but not towards to the hearing loss but to my future. I have no control and this doesn’t sit well with me.
Overall I struggle as to where I place my emotions - I’m angry but there’s no one to blame. I don’t want to take it out on others as it’s not their fault but at the same time it’s not mine too! So where can I place it! I’m not exactly the most forth coming person when it comes to expressing my emotions. I don’t find it easy to talk about things that upset me.
All I can do is wake up tomorrow and move forward like I always do! I’m lucky to be surrounded by people who are supportive - friends, family and those whom I have the pleasure of working with. I am not alone.
Who says being deaf needs to be easy - Its a challenge. A challenge that I will face head on!
People say how can you be proud of a ‘disability’ because the term disability invokes the thought that people are dis-able to do something, in my case the ability to hear. So why am I proud to be deaf?? My deafness has given me strength, and without my pride in my deaf identity I wouldn’t be where I am today. It has been a long difficult journey to my own acceptance. When I was a kid I hated, i mean really hated being deaf, and because of this I hated myself because I was broken, different to everyone else. You could I ask me what I wanted to be when I grow up, I would tell you I wanted to be hearing. As a child we were bombarded with the message we can be anything we wanted to be, we just had to work hard! I can never be hearing, and for me as a child/teenager was a hard thing to really deal with. I then believed that I would be nothing, having no confidence in myself. I never loved myself nor believe that someone else could, so I never let other people be there for me emotionally. I became withdrawn into myself. This then all changed smile emoticon I met other deaf people, learn sign language and alongside this I learned to love myself and because of this I became strong. I currently face the prospect of losing all of my residual hearing one day….. and you know what!? Its okay! I am going to be okay! Being deaf is a big part of my life and who I am. I may not be able to hear with my ears but I can hear with my eyes!
