My reply on Deaf (dis)empowerment

Hi everyone,

It’s been a while since I last posted, it was because I was in Helsinki, Finland, for a conference on Signlanguage Interpreting. I had an amazing time with my group of 7 people. The conference itself was not completely accessible (no interpreters in the afternoon and evening programs), so I can’t judge on everything that happened, but I can judge on what was said during one of the afternoon programs.

It was a workshop in spoken English, and I knew there wouldn’t be an interpreter, because non of the English spoken workshops were interpreted the days before. Because I had already followed the other workshop that was given again at the same time I ‘had to’ go to that English spoken workshop. I asked the organisation if there’d be an interpreter and they said no. So I had to pull one of my friends out of the other workshop so she could interpret for me. It was her own suggestion to do so, but it didn’t feel quite right. There should have been an interpreter, especially if they said beforehand that all would be accessible for both deaf and hearing interpreting students. It wasn’t.

After giving the organisation the feedback that everything needed to be accessible, not only for the hearing but also for the deaf interpreting students, someone who also followed the workshop replied “All the important lectures were interpreted”… I was outraged and confused… how could an INTERPRETING student disempower me and the other deaf interpreting student so much?!  Who is she to decide what’s important enough to be accessible for me? She should know better than to say that… I still get angry when I think of it.

In this blog I’m replying on this post/workshop from Trudy Suggs: Deaf Disempowerment and Today’s Interpreter

In this post the writer tells everyone about her personal experiences with disempowerment. I’m not going to talk about what Trudy said, because that’s already said. But my previous example of interpreters making a decision for me is one I wanted to share.

She ends with this: “We must remember that all individuals, deaf or hearing, should always strive for full, mutual respect rather than disempowerment”. This is what I always try to do, and what I expect other people to do as well. But in Helsinki, it wasn’t nearly the case. Most of the time I try to connect with other people, new people. That’s what I do. But almost every time people spoke back to me instead of signing. Now, I know that there’s a lot of new things going on at once when you start going to conferences, and after a day of listening to/looking at lectures that have to go through 4 interpreters (2 deaf, 2 hearing) – where information gets lost sometimes, I can understand that you want to speak your own preferred language, but don’t get angry with me if I do the same.

Now, I’m not saying that the whole conference was crap, because it wasn’t. There were many nice things: the morning lectures that were in International Sign were AMAZING – no interpreters needed for me, and I secretly laughed on the inside when a lecturer made a joke and some people who were fluent enough in IS laughed along, and the rest of the people had to wait for the 4 interpreters to figure it out properly. The spoken English workshops weren’t always fully accessible, because it went from English to Finnish Signlanguage to IS, and I missed a lot of in-between-jokes. But beside that, it was amazing to see that there were Deaf Interpreters present, it makes me want to take up interpreting again as well!

More Deaf interpreters are needed, and maybe I wouldn’t be such a great deaf interpreter – since Signlanguage isn’t my first language – but it’s my most accessible language right now, so at least I’m inspired to try. That’s the most important thing I got out of the conference – my being inspired to try and become not just a Signlanguage teacher and a nurse, but also an interpreter! That’s empowerment.

Love, Sam

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My Deaf identity in progress

Hi everyone,

I’ve been talking to some great people today and I thought it was about time I’d share something with you all.

There’s something I need you all to know about me, it’s not shocking news, but…
I’m Deaf. Yes, I am. I can speak perfectly, in my voice you’ll barely notice any difference from a hearing person, but I can’t hear you anymore. Therefor I need to adapt myself by reading lips, reading gestures and reading facial expressions. But it also means that other people have to adapt to me as well.

Compromising in communication
We have to meet in the middle, otherwise it’s not fair to anyone. It’s what I hear a lot from Deaf people: “I have to do all the work to follow a language that’s no longer accessible to me, and the hearing people don’t adapt to me”. Sadly this is more common than uncommon, and I’ll tell you why it’s so common: there are so many hearing people and less Deaf people. It’s ‘normal’ to WANT to fit in to the regular group, do what everyone else is doing. If that means I have to speak instead of sign, I will. And many other d/Deaf/HoH people will do the same.

I’m not saying that it’s our own fault that hearing people don’t adapt to us, but they usually don’t know that it takes a lot of energy to ‘act hearing’. I think it’s the hardest for people who have turned deaf all of a sudden or have had a lot of speech therapy and therefor sound ‘like every other hearing person’. Nobody notices that we struggle in communication, because WE can communicate perfectly. It’s just that the communication coming back to us is like a 10.000 piece puzzle we have to solve within seconds.

I’m not saying either that hearing people aren’t trying to compromise in communication, but a lot of the time I get said to “never mind” or “I’ll tell you later”. And that’s not compromising, that’s deciding for me what’s important enough to be told. I hope that Deaf people can tell hearing people what it is in communication they need, because that’s a concrete solution. I can’t tell you hearing people what all Deaf people need, because that’s different for everybody. But just let hearing people know what it is you need, and if you come across a decent person, they’ll listen and at least try.

Hearing Identity
I always have considered myself to be hearing, even when my hearing started to become less and less, I have always said “I’m hearing”. And people believed me, of course. Why would you think otherwise when you sound hearing, and act hearing?
Problem is: I am not a hearing person, not even close! I camouflage it well with nodding in crowded conversations, and reacting to what someone has said in the hopes that I answered correctly to whatever it is they were asking me. I can’t keep up, and then your identity crashes.

Identity crisis
This was what I discussed briefly with a friend of mine: he used to tell everyone he was ‘hard of hearing’, and he could speak so much that he fooled everyone with how ‘bad’ his ears were. Eventually we both started to do the Signlanguage program and I saw an identity shift. All of a sudden he called himself Deaf, refused to wear his hearing aids and he only wanted to sign. I didn’t get it: what had changed so much that he decided to do this? Now I realize there’s sort of a spectrum that goes from 100% hearing to 100% Deaf. He always had tried so hard to fit in with hearing people, by talking, by reading lips, by pretending he understood everything that everyone said. Now it was time to explore the other side, the 100% Deaf side. And I think that moment is coming close for me as well.

100% Hearing – 100% Deaf
I tend to be somewhere in between. I often say I’m ‘just’ hard of hearing, but when I say that, it’s:
1: Not completely true, because I’m deaf;
2: Harder for people to understand, because they never know how much you can and can’t hear. And since many deaf/hard of hearing people are experts on reading people’s gestures and expessions, it’s hard to guess when something isn’t being understood.

When I studied to become a Signlanguage Interpreter I always said “I’m hearing” – that was my 100% Hearing side. I felt alone and like a liar, because I had to work so much harder than anyone else in that group to even come close to a good interpretation of something that was said – simply because I didn’t hear it well enough.

Now I study to become a nurse, and on day 1 (2 years ago) I said to my classmates: I’m Sam, want to become a nurse, and there are some things you need to know: 1 – I have Tourettes, 2 – I am hard of hearing and 3 – don’t treat me any differently, I will tell you when I haven’t heard you.

Transition to calling myself Deaf
Right now I sometimes refuse to speak in front of other people (for example in stores, when I’m outside walking around town), and some days I don’t want to wear my hearing aids or speak at all. I only want to sign and unfortunately that’s not always possible with friends and family. I wish I could say that I’m Deaf and proud of it, but right now I just feel deaf. Impaired in communication and cut off from the world sometimes. That’s why I’m experimenting with trying to say that I’m Deaf – I sign, and you’ll have to deal with that.

It feels good to just use signlanguage, because it makes it clear: I can’t hear you, and you have to adapt to me as well. As for what I’m going to decide, I’m not sure yet.. I prefer to sign, but if people speak to me, I will give in most of the time. I’m experimenting with not doing that.

I’ll keep you updated on how my journey goes. Where it leads me.

Love, Sam

Train colliding with a person

Hi everyone,

Everyone who takes public transportation as a way of getting around has heard or seen the phrase “Train has collided with a person” (or some form of that, it’s the closest translation I have to the Dutch variation of this phrase). I read that phrase 2 days ago when I came back from an interview.

 

It makes me go cold inside: who was it? Was the person forced, was it an accident or was it suicide?

End of last year
I saw on the news that my classmate’s sister had been struck by a train, and that she hadn’t survived. Soon it was called a suicide, but the family didn’t see how such a girl as her could do something like that. After a lot of researching it still remained unclear to the family what had happened.

What happened 2 days ago
People sighted: “We’ve got another jumper… do those people only think of themselves?!”… like the hour of delay it caused us is worse than the horror that the strucken person and his/her family must go through. It makes me feel outraged! I think there’s too little thought about the reason people get hit by trains: yes, a lot of the time it’s suicide, but not always! And what if it’s a suicide, so what? Does that make it any less significant?

rail-tracks.jpg

Suicide
Is something a lot of people don’t understand: how can you WANT to end your life? How can those people be so selfish? – Those are the questions you hear a lot. And especially this one: “How can you do that to the people who are riding on the train, they get delayed because of you” – if there’s something I get angry at it’s people like that!

But, fair enough, if you’ve never been suicidal, I can understand it’s something extremely difficult to comprehend. People who attempt or succeed at suicide ‘look so normal’, and ‘you don’t expect something like that from them’. People who are suicidal look absolutely ordinary. Because they’re people, just like you and me.

So… how does it feel?
Like the world is nothing but darkness, as if from inside there’s only emptiness and no more hope that the world is going to get any better than it’s today. No more hope for the future. An endless emptiness that can’t be filled with something else but death. Sound quite vague, but that’s how I’d describe it.

From the outside you can’t see it, people are often wearing a mask and are saying “I’m just fine, thanks!”. People who have these kind of thoughts, they work, study, have friends and partners, and loving families. It’s not always the people with the horrifying pasts. Suicidal thoughts will come to the best of us. In times you least expect.

 

Jumping
Yes… jumping, that’s a tricky subject. I once saw someone jump off of the building I now live in, at the uni campus I study at. It was as if my heart stopped for a beat: did I just see that happen?! Someone who was so desperate, had so much darkness inside, that jumping seemed the only way out? I didn’t think it was selfish at all – someone who makes that decision has thought long and deep about it: what will be the consequences for my family, the people who will see me jump/find me on the ground? Will it make the pain go away, or will things just get worse?

Solution
It’s a permanent solution for a temporary problem. Something that fascinates me and at the same time scares the hell out of me. Here a song that tells about it:

Autumn – premeditated dying

I’m curious
How other people think about this subject. I can discuss it for hours, but am mostly interested how you think about people who decide to make an end to their lives themselves instead of waiting it to end on its own when it’s ‘their time’.

I don’t know how to close such a heavy blogpost, so I’ll just end it off with saying goodbye for now 🙂

Love, Sam

Medication – Yes or No?

Hello everyone,

Today I’d like to talk to you about medication (for Tourettes, ADHD, OCD, depression, mania, psychosis, but also for physical disorders…you name it!) and why and why not? I have loads of  opinions in my head and have my handy dandy Farmacotherapeutical Compas app with me to tell you some side effects of medication.

Medication in general
Can be very neccesary sometimes. When I take Tourettes as an example, I know people who benifit from their anti-psychotics massively, they don’t Tic as much and feel much better about themselves. They can actually do things now because they’re on medication.

You can almost hear a ‘but’ coming. Even as a Deaf person I can hear it coming. Here it is:

But: you always have to compare the up- and downsides. What weighs heavier, the upsides or the downsides of taking medication?

Anti-psychotic medication
Are, like it says, helping people cope with their psychosis better and often ‘get them out’ of psychosis. They also help people with Tic disorders because of – neurotransmitters. I’ll explain how anti psychotics work and why they work for both psychosis and Tourettes:

Your brain has neurotransmitters (‘chemical messengers’) that sends information from one side of the brain to another side. One of those neurotransmitters is called Dopamine. A high concentration of dopamine makes your brain work differently, because information is sent through the brain in another way than it normally does. Or it fires out information too much. Basically the higher concentration of dopamine  can cause both Tics and psychotic symptoms like hallucinations and delusions.
Anti-psychotic medication lessens the signals of dopamine in the brain, so that there’s a better chance of ‘normal information sending’. (Source: Psychosenet.nl )

The reason a lot of people stop this is because of side effects (weight gain, sleepiness, dizzy spells, nightmares, suicidal thoughts etc. – look it up for yourselves if you want to know more about side effects).

Anti-depressants
Are explained most of the time as meds that help with a chemical imbalance of serotonin deficiency. While I was one of the people who thought that too, let me explain further:
There’s no fixed explanation why people get depressed (some through genetics or life events- but why some people do get it and others not, that’s the question!), let alone how anti depressants improve symptoms.

That being said, researchers believe that it’s caused by how they affect certain brain circuits and how they react to the neurotransmitters (like serotonin, dopamine and norepinephrine). Different antidepressants seem to affect how these neurotransmitters behave.

There are different kinds of antidepressants, like SSRI’s, SNRI’s, TCA’s, NDRI’s.. I’m not getting into what is what and might work for what, because that’s individually figured out. That’s the downside of having these kinds of medications: you never know beforehand what will work for you, so you’ll have to try a couple to see which one works for you (With the least side effects!!).

Mood stabilizers

Mood stabilizers are the ones like Lithium, Carbamazepine and Lamotrigine, that stabilize the mood of (usually) people with bipolar disorder. It can also be prescribed to if you have severe mood swings (like in Tourettes, or when you have a antidepressant-resistance and are depressed).

Between 20-50% of the people who start with mood stabilizers will stop because of the side effects like: weight gain, thirst, nausea, muscle weakness/aches, emotional numbness, fatigue and concentration problems. That mean that 50-80% will stay on them, because they probably work! I don’t know how they work, but I’ll figure that out and let you know.

What should you do?
That’s always difficult to tell, because I’m neither a doctor, nor can I look into your brain to see how severe the problems are. If you’re willing to accept that side effects may arise, or really have to take medication because life becomes unmanagable otherwise: take it! Side effects might be bad, but feeling worse is even more detrimental to your health and self esteem.

Love, Sam

Question: what kinds of medications have you been on? Did they work for you or not?
Would you suggest it to somebody else?

National Dutch Tourettes Day!

Hello everyone,

Last week I went to the national Tourettes contact day and it was awesome!

Dutch Tourettes Association
They have a contact day every year around between april and mid-may and it’s especially for people who have Tourettes and parents of children with Tourettes. For the 85 children and teens this year there was an activity outside of the location, at an amusementpark. They do that every year. A lot of respect for the guides that go along with those 85 hyperactive kids!

IMG_7420

Camp Twitch & Shout
This year I am going to camp Twitch & Shout in the US, bút am planning on bringing what I learn there to Europe to implement there as well, so that European children/teens will have the same experience as we did last week for 1 day, and the kids and teens at CT&S will have the same experience for a week.

What experience will people have at the contact day/CT&S?
It’ll be a welcoming home, a family, almost sort of a Culture. New people coming in always say that they feel welcome, at home, nobody is staring at them and everything is just like a normal day out with friends.

For the non-new people it’s even better: you already know people, you’ve made friends and feel comfortable there. Like it’s a 1-day-a-year family that you never feel awkward with because of Tics and Tourettes. It feels like home.

Being a volunteer
ROCKS! I was allowed to co-host a meeting for young adults and parents of young adults. Initially me and my fellow host prepared for young adults only to brainstorm on activities they’d like to do more often with each other, but there were only 5 young adults and more than 10 parents of young adults. We switched things up and the young adults gave advice to the parents about everything they had questions about. I felt proud of ‘my group’ because they were so empowered and positive, and I love the fact that I’m part of a young adult group that is so strong!

What are other things I do for the Tourettes Association?
I organize meetings for young adults – we go to a cafe and chat regularly, and we have 1 big event every year. This year it’ll be on the 7th of May, we’ll have improvisation theater. Should be fun! Other things I do and like to do more often is giving lectures/workshops/raise awareness to groups that have nothing to do with Tourettes.

Awareness
This year there’s a group of Nurses in training who want a lecture about Tourettes, so a friend of mine and I are going to give them that experience. We did a similar lecture before and we had an ‘experience Tourettes’ theme in there, where we’d let them experience a little bit how Tourette, and especially Tics, work – by making them write something, having to stripe out every 3rd word and rewriting it (mental Tic), every time I clap my hands they have to let go of their pens, tap the end of their table (physical Tic) and then return to writing. They also have to have written their assignment within 1,5 minutes.

For people with Tourettes, it’s sometimes difficult to write properly with all the Tics that are going on, so in that ‘experience Tourettes’ excercise nobody ever finishes their assignment and they get frustrated that they ‘have to Tic’ because I make them Tic. And that’s what Tourettes sometimes feels like.

The students we’re teaching about Tourettes always go away with more knowledge, and that awareness creating is what I want!

Love, Sam

Question: would you want to raise awareness about Tourettes/other syndromes? Why or why not?

I went to DELAIN!

Hello everyone,

Something that I enjoy dearly is music. Especially music with a loud bass so I can feel the rhythm. For 10 years I have loved the music of a Dutch band called ‘DELAIN’, and I went there a little while ago! Obviously I can’t hear as much as I could 10 years ago, but I still enjoyed every moment of it!

In this video I will probably just give examples of songs I like MOST and why I like them. If you’re hearing and can adjust the bass sound, amplify it! But then again, you can probably hear the parts where the bass would be loud. If you’re Deaf/deaf/hard of hearing and do like to listen to music: do what you have to do, it’s worth listening to!

1. Suckerpunch

This one means a lot to me, even though it’s just a new song. It’s one of my favourites to listen to. When I read the lyrics I can relate, because of my depression not long ago – and me crying to my girlfriend to ‘get the demons from my dreams’. It’s not particularly a happy song, but it’s a good song!

2. The tragedy of the commons

This on is also fairly new, and is (to me) about the destruction that people can do (and do!).”Close our eyes to darkened skies” –> people choose (and have a right to) not wanting to know what’s going on in the world. It’s kinda depressing nowadays to see the news, and I am scared of where the world is going. This song puts those thoughts nicely together. And why I started to like it was because of the bass, obviously.

3. We are the others

This one is dear to my heart. In 2007 a 20 year old girl named Sophie Lancaster was murdered by a group of teenagers because of her (gothic) looks. This song is a tribute to her. At the time I was really scared, because I had the same gothic looks. Were there really people out there trying to kill people because they look or act different?

This song is so important to me because it could apply to everyone! But especially, as a Touretter, it applies to me: I do things that are not perceived as ‘normal’. I twitch, I make noises (that I often don’t even hear myself making, which makes me wonder what other people hear me tic about) and sometimes shout. I get anxious easily, have to count things, have to have things done in a certain order. Which isn’t ‘sad’ or anything, it’s just me being myself – me being different from the people around me. And they are different from me as well, so the song applies to all of us who recognize themselves in it, one way or the other.

4. Sing to me (ft. Marco Hietala from Nightwish)

“Happy tears fade fast, sad tears tend to last”. To me a song about having done things we cannot undo. Good or bad. To me at least.
I mainly like the song because of the loud bass (especially when it’s live on stage!) and the fact that I can actually HEAR Charlotte’s and Marco’s voices properly sometimes when I listen to the song through my music link (that’s sort of earphones that are linked to my hearing aids).

That’s pretty much what I wanted to share with you all today! Bit of a personal blog, bit of a fun blog, and my question to you (whether you’re Deaf/deaf/hard of hearing/hearing/something else) is: do you like music? If yes, what kind of music?

Love, Sam

Preparing for Camp Twitch&Shout

Hello everyone,

I’m counting down the days until Camp Twitch&Shout starts. I almost cannot wait until it’s finally there! 74 more days to go and then it’s there!!

Travel to the US
As I am an ocean away from the US, I have to take a plane or two to get to Athens, Georgia for the preparations of the camp. Or I’ll just take a rowing boat, but I think I might have to get started a bit earlier on that if I plan on doing that. Just kidding, the only thing I fear more than flying is boats!

I had a meeting at the student travel agency, and we set up the following plan for the first weeks:
– Fly from Amsterdam to Toronto on the 13th of June, where I will hopefully stay with a host until the 20th;
– The 20th I’ll fly from Toronto to NYC, where I hopefully will stay at my father’s friend’s house until the 24th;
– The 24th a fellow camp counselor will join me in NYC and we’ll go to see gay pride and festival on the 25th and 26th of June.
– Then on the 26th of June I’ll leave in the evening with my fellow camp counselor to Washington DC, where we’ll stay until the 30th.

THEN WE HAVE CAMP! *jumps up and down hyperactively*

After camp I fly from Atlanta to San Francisco, where I will do a tour to Yosemite National Park. Then I’ll have a few days left in SF before I take the bus to LA. In LA I will do a 4 day tour to Las Vegas, Route 66/Hooverdam and Grand Canyon.

On the 24th of July I will leave LA and will head for Chicago for 4 days. Only then I can leave again to Amsterdam.

suitcase

Preparing for my trip
Since I’m not an US citizen, I normally would have to have a visa of some sort. Since I live in a country where the Visa Waiver Program applies I can stay in the US traveling for a maximum of 3 months. I will stay for 6/7 weeks so that’ll be no problem.

Meeting new people
I love meeting new people, and at Camp Twitch&Shout that’s certainly going to happen! Funny fact about me: In my own (spoken) language I am quite awkward socially, am not always able to make contact with people. In signlanguage I’m not awkward, but a bit shy, and in spoken English I am very outgoing and happy. Strange how different languages kind of make you a different person (more about that in a later blog!)

Because I literally couldn’t wait until I could meet my fellow camp counselors I asked some people to skype with me to get to know each other a little bit beforehand. And they actually wanted to! Only downside to this is: time difference! When I wake up and am most hyperactive and want to socialize the US-people are asleep. And when it’s afternoon and most people are still at work there, in my place it’s the end of the evening.

Surprises
All my hosts and even my girlfriend will be surprised by things I’ve got set out for them, but I’m not going to share those things ghehe!

More on my travel plans and how they’ll be working out, you’ll see later on when I’m traveling 🙂

Love, Sam