The way towards my last
supper Tijnke van Gelder
ne episode of Dr. House, that left me with a lot of questions.
The patient in this episode was blind, but he told them that his life was really normal. He enjoyed everything of it and he was planning to propose to the love of his life. This doesnâ€™t really matter, he was very sick. They decided that in order to save him they had to do surgery, with the change that he could become deaf. First he didnâ€™t want to do it, his girlfriend begged him to. He said that if he would become deaf his life was impossible, but he went with it. So after they did the surgery, they found out that he indeed became deaf. - Girlfriend still loves him, is willing to stay with him for the rest of her life. End of the episode. There I was sitting being completely blown away. Why didnâ€™t they show what happened after that, did he still wanted to live now ? How did he start learning to communicate again? Is he even able to learn a form of communication? In my family I have two deaf people, so I know how it kind of is for them. But being blind, that is so much more difficult. How does their world look like?
D e a f b l i n d what if y o u â€™ r e
b o t h ?
tarting to dig into all the information I realised there was not that much to find about deaf-blindness and their way of living. Anyway I found out that most deaf-blind people have ‘Usher’, which is a syndrom what makes you deaf and blind. Often they are born only deaf or blind and later in life they also loose the other sense. Very important is to understand that a person with this syndrom is not mentally disabled but often they assume you are which is not the case. Complete blind and deaf is not that common, they still can see a little bit or hear something with a hearing device. Besides Usher there are other ways to get deafblind, like AIDS or if you’re born with down syndrom. Those people can communicate in many different ways determined by the nature of their condition, the age when they lost their sense, and what resources are available to them. For example, someone who grew up deaf and experienced vision loss later in life is likely to use a sign language (in a visually modified or tactile form). Often performed with the persons holding eachothers hands while talking to eachother. Others who grew up blind and later became deaf are more likely to use a tactile mode of their spoken/written language. Although answering them has to be done also with hands. Methods of communication include: Use of residual hearing (speaking clearly, hearing aids) or sight (signing within a restricted visual field, writing with large print). Tactile signing, sign language, or a manual alphabet such as the American Manual Alphabet or Deafblind Alphabet (also known as “two-hand manual”) with tactile or visual modifications. Interpreting services. Communication devices such as Tellatouch or its computerized versions known as the TeleBraille and Screen Braille Communicator. Multisensory methods have been used to help deafblind people enhance their communication skills. These can be taught to very young children with developmental delays (to help with pre-intentional communication), young people with learning difficulties, or older people, including those with dementia. One such process is Tacpac. Deafblind amateur radio operators generally communicate on 2-way radios using Morse code.
Getting this information made me curious in two things. One is the non-verbal communication which for me seemed very interesting. In my family we have two deaf people and I always thought it was so cool that they could read my lips. Its easy to forget they are deaf. But in this case they canâ€™t read your lips either.. The other thing I found very intruiging was the view on the world. How do they experience life and how do they feel about not having those senses.
Non verbal communicaiton
elen Adams Keller (June 27, 1880 â€“ June 1, 1968)
was an American author, political activist, and lecturer. She was the first deafblind person to earn a bachelor of arts degree. The story of how Keller's teacher, Anne Sullivan, broke through the isolation imposed by a near complete lack of language, allowing the girl to blossom as she learned to communicate, has become widely known through the dramatic depictions of the play and film The Miracle Worker. Her birthplace in West Tuscumbia, Alabama, is now a museum and sponsors an annual "Helen Keller Day". Her birthday on June 27 is commemorated as Helen Keller Day in the U.S. state of Pennsylvania and was authorized at the federal level by presidential proclamation by President Jimmy Carter in 1980, the 100th anniversary of her birth. A prolific author, Keller was well-traveled and outspoken in her convictions. A member of the Socialist Party of America and the Industrial Workers of the World, she campaigned for women's suffrage, labor rights, socialism, and other similar causes. She was inducted into the Alabama Women's Hall of Fame in 1971 and was one of twelve inaugural inductees to the Alabama Writers Hall of Fame on June 8, 2015. Helen Keller has been a great example and fascinated me with her work. I read & watched as many as possible things about deafblind people. Some amzing documentaries and films are made to show how they are able to learn things. Very beautiful to watch.
After mailing with 10 different institutes I found someone who was willing
to get an interivew. I didnâ€™t understand how this woman was able to write an email, this was kind of strange. We mailed for like a week to arrange everything. The problem was to get a tolk, they are expensive and rare.
he woman who I met was called Erica, she has been deaf already her whole life and blind since 18 years. When I arrived, she opened the door herself. Normally you would say a form of ‘hello’ but now she put her hand out and I touched it to let her know I was there. She pointed behind her and then walked in front of me towards the door. The house didn’t seem any different then other houses. I think I expected some sort of adjustments, but there where none, or at least none that were noticeable. At the table the tolk was sitting, her name was Laura. After Laura shook my hand Erica wanted to ask me if I wanted tea or coffee. This was the first moment I saw how Erica could communicate, she touched Laura with both her hands to get attention. Erica was able to make some sounds in different tones so she could make things more clear. Laura responded by grabbing her hands and asking her what she wanted. Erica always spoke in normal sign languages so she could answer in that way. Laura translated the question about the tea or the coffee to me, and then took the hands from Erica again to tell my answer to her. Erica left the table at that moment and walked towards the kitchen. Laura told me that she didn’t know any other deaf blind people who where so independent as Erica. Which meant that I had not the best example of deaf blindness, but it was sure an interesting one. Erica came back with a cup of tea for me, she sat down and Laura translated the thank you and described her the place where I was sitting. It’s very important for a deaf blind person to get descriptions of the situation, this way they can talk into the right directions and they have an idea of how the place looks like. Erica then felt her wrist where she was wearing a watch. She signed in the air something to Laura who responded again by grabbing Erica her hands. Laura told me that Erica was worried we would not have enough time. The only thing I was fascinated by was the watch. Laura explained that for blind people they nowadays only make watches with a voice in it. Somehow the whole world seems to forget that there are also deaf blind people around and that they need a watch to feel the time on. Luckily Erica had one where you could feel the time.
From this point in the story I will just tell the translations Laura made for me. Erica and her husband where both deaf when they met each other, they got 3 children. None of her children are deaf, but they always spoke together in sign languages, so sometimes people seem to think the children where deaf too. Before she became blind she had a passion for drawing and painting, once she got blind she started working with marble and mosaic plates. She remembers how things look like so she can shape them from her memory. The most things she still can remember very clearly. The colour yellow, the way her house looks like and flowers. She styled the whole house on her own, her husband has not really a good taste if it comes to furniture. So she asks him to describe the colours of the object in this way she can figure out if it would fit with the walls and floor. Her sculptures are pretty difficult for her to make, mostly because she canâ€™t use a hammer very safely. Although she still uses one, she is always afraid to loose her fingers. First she would draw what she wants to make, but with little stones. She is not afraid to ask help, but she wants to learn to do all the things on her own. Because you feel everything with your hands, the material has to be nice. Like smooth stones and wood. Although she really really hates metal.
Her sense of smell and taste became incredibly strong. Erico told that she sometimes can’t stand the smell of some people, she told me that she can even smell from where they are. Because of there taste she can tell the difference between home cooked food and produced food from a factory extremely well (read she hates produced food). Although it’s not like some things she usually didn’t like or liked changed, that stayed the same. She loves cooking, still cooks most of the meals for her and her husband herself. Although she does everything from memory she is really good. Like I said, she is very independent. When in a car she can tell the way home by feeling and counting the hobbles and turns. It takes her only 3 times a visit to completely memorise a place. Actually according to her she doesn't need a dog, cause she memorise it better then he does. But she loves him so thats why she things its better to keep him around. Thanks to her special computer, works with braille and morse code, she can email and send text messages. It’s one of the most interesting things I’ve seen in technology this far. You can attach your phone to it or a laptop and surf the internet. There are special places she can go where the building of the websites is made for blind people. All very impressive. This way she booked a whole holiday, on which she went alone. She arranged everything from the cab picking her up at home to the people at the airport bringing her at her destination. I asked her if she missed something from when she still could see. She said that she misses being able to joke as much as she could do before, but still see manages to be funny. When she heard she was turning blind, she went to Italy. The last thing she really wanted to see was Italy. Also she learned braille so she could continue reading. She knew that those things where the ones she would miss the most and this way she tried to save them
The end of the interview she showed me some of her art work. Very interesting to see how she can make an owl or a dog out of stone from working from her memory. Everything she did she did by remembering it. She didnâ€™t liked already before she was blind to take pictures. Now she laughs about it, she took pictures with her mind she says. Thats why everything is still very clear. The technologies she is using are all very new. A lamp that can scan text and translate it into braille, this way she could read her post. At this moment she is one of the few people that is learning a new sign languages. Called Heptic, this is from Finland. You draw on the blind-deaf person his back instead of sitting in front of them. This way the tolk can translate while the person can sit face to face with his partner. Way more personal, but also more difficult.
“The last thing I really wanted to see was Italy”
That was such a powerfull thing she told me. After she heard she was about to get blind she spend her time learning to read braille and vistid Italy for the last time. She wanted to see the beautiful nature, so she could take that with her. After the interview I was very inpsired but I didnâ€™t know how I could use what I got to know. Thinking about installations or experiences, but none of those really triggered me.
What would be the thing that I want to see before I get blind. Difficult question. Even
made me a bit sad, but its sometimes good to appreciate what you have and can. Didnâ€™t know where to go to with this. So I let fload in my head for a bit. I focused on working on the non verbal communication. This is only not connected to my train of thoughts towards the supper. Which did help me towards this was an amazing food-blogger who I followed already a while ago.
Some hills in beautiful Italy. She told me she went to Tuscany, but like I said she doesnâ€™t care about photos so she had none. Iâ€™m imagining it like this, this is what I thought was breathtaking the times I went there.
bom of inspiration hit me after I went trhough some interesting food desing websites and bumbed into a photoserie made by James Reynold. He recreated a series of bizarre last meals chosen by actual death row prisoners on the day before their execution. Reynold filled orange prison-issue trays with some of the most unusual items the murderers asked for.
James Reynoldâ€™s Last Suppers
Victor Feguer asked for an unpitted olive because he thought it might grow into an olive tree from inside him.
t's interesting to think about why they chose certain meals. Did they choose the meal because that's what they had missed most while being in prison, or did it remind them of happier times or childhood meals? Or was it just what they felt like at the time? Many inmates rejected the offer of a last meal, as they probably had other things on their mind. Most of the meals requested by the inmates were fast food staples like McDonalds, KFC or Burger King. But some requested more interesting items like an unpitted olive or a cream cracker. James, the photographer, said: 'Burgers, French fries, Coca-Cola, McDonalds and KFC are the most common but I found the slightly more unusual meals much more intriguing. - Inmates are allowed a meal allowance of up to $40 and almost anything is permitted within this budget. The meal can be bought either at the prison canteen or from a nearby outside source. Some inmates chose packets of paracetamol, painkillers and even a gun but their requests were rejected.
But why can they only chooce a last meal? What if they want to hear or see something before they face death?
Can the â€œlastâ€? supper be meant for something else ?
Maybe for when you loose your sense..
A ceramic slap plate I made, a supper is a small meal so it would be served on a small plate. I choose the colour cause it has this peacefulness over it. Calming. Soothing.
Very quickly, but what is supper actually ?
Supper n 1. (Cookery) an evening meal, esp a light one 2. (Cookery) an evening social event featuring a supper 3. sing for one's supper to obtain something by performing a service vb 4. (Cookery) (tr) to give supper to 5. (Cookery) (intr) to eat supper
ou remember the question what would you rather be, deaf or blind? Of course the answer on this is neither. Although it will make you think: what would I rather be? If I would be blind I could still listen to music, have a normal (verbal) conversation with my surrounding. The only thing I have to get used to is never seeing again. So actually on the other hand being deaf would not be that bad, you can see everything and everyone. Watch the sunset and see how the seasons change, but you could not hear the birds in the morning or the radio. Like I said, the answer will always be neither. Or senses are what we need to experience life as we know it. You would not hear me say that if youâ€™re blind, deaf or have any other form of sense-loss life is less precious. Only what if youâ€™re used to a curtain way of living and that would change, did you ever think about that. How can we deal with a loss, how do we deal with loss? One thing is that we start grieving.
The more significant the loss, the more intense the grief. That for a fact. I’ve read about how we humans deal with grief. The five well know stages we all go through according to every therapeutic book about death ever. In 1969, psychiatrist Elisabeth Kübler-Ross introduced the “five stages of grief.” These stages of grief were based on her studies of the feelings of patients facing terminal illness, but many people have generalized them to other types of negative life changes and losses, such as the death of a loved one or a break-up. Denial: “This can’t be happening to me.” Anger: “Why is this happening? Who is to blame?” Bargaining: “Make this not happen, and in return I will ____.” Depression: “I’m too sad to do anything.” Acceptance: “I’m at peace with what happened.” (You don’t have to go through every stage to resolve your grief feelings) Although it is true that these things seem a bit obvious, let’s take the advice on how to deal with grief as something serious. Cause only when you loose something you realise how important it was for you. Losing one of your senses could be just as intense as losing a loved one. Kübler-Ross herself never intended for these stages to be a rigid framework that applies to everyone who mourns. In her last book before her death in 2004, she said of the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Individuality.
“I’m at peace with what happened.”
o could the last supper be a tool to say goodbye? To deal with your grief. To find our peace with the lost? If so, then it should be something that is also as individual as possible. Although I felt there was something off about this, I mean of course everyone has their own way of saying goodbye. I believe we should have a choice in this. Though I don’t agree that we have a free will, like those prisoners didn’t had a free will. They had to die anyway, like it would be the same if you would turn blind or deaf or something. In the prison this not having a free will was expressed in the rules and limitations they had with their choice of meal. Probably it was not even served differently then their food before. That is cruel, inhuman, but also how it is. I will not go into the whole discussion if executions are a good thing yes or no. But I will go against the strange idea of giving them a last meal but still restrict them. It’s a difficult situation.
hat would be the last thing I want to see/hear/feel/taste/smell before I would loose that sense ? I can create a whole supper dedicated to the answers on these questions. Only like I said, it has to be this kind of unpersonal thing while being personal. Ha. Sounds difficult. But I can’t make it more beautiful then it is, I’m going to loose it anyway. I like the having of a choise but with rules you have to think of. -
I have to make it myself Material has to be from a nearby source Restricted within the size of a tray I can not use other people
Next to the rules I was thinking too much, I had a difficult time figuring out what I wanted to have for the last time. You never really like to think about this, makes you uncomfortable. Just a bit. But why would I be the only one thinking about this? Doesn’t it make you more aware of what you have?
Letâ€™s make a database with everyone their last supper
Feel Hovawarts puppies
Hear a really good joke
Hear the roll of the waves
Feel my chest hair
Hear my mother laugh
Feel my muscles in my arm
Hear a girl orgasm
Hear the people you love talk
Feel my own skin
Taste red wine
Taste something horrible
Taste black pepper
Taste an italian magharita pizza
Taste black coffee
Taste fresh orange juice
See the sea
Smell rain on warm asfalt
Smell of home
Feel snotty putti in a plastic bag
The summer rain
Feel a very short haircut
Smell and taste cinnamon
Feel foam balls
Feel the hands of my loved ones
See my family infront of me
Smell my dog
Smell my first parfum ever
Smell and feel Fresh bed linen
See the Louvre
Taste and smell dark chocolate
See the Aztec Temple
Smell and feel salty waves
See a rocket launch
See the dunes of Vlieland
Wear new socks
Taste a good whiskey / dry glass of Oran
Have a campfire
Taste a freshly picked strawberry
Smell the mountains in Austria
Taste a very good steak / a Limousine steak
Hear the sound of waves in the sea
Smell the bamboo fences I made when I was a child
See the eyes of the love of my life
Smell the forest after a storm
Feel your boobs
Smell the wet sidewalk / concrete
Smell the fresh rain
Feel the water while being on acid
Taste a thanksgiving turkey
Feel the water trough my fingers
Hear music from Chopin
Feel the inside of a vagina
See Yosemite National Park
Taste the 10 course dinner at my favourite restaurant
Hear french fries fry
Smell clean laundry
Smell my 1st love perfume
Feel my friend her boobs First I want to eat a mustard soup, the way I prepare it myself. Especially if I made the broth myself. As a main dish I want to have the leg of a cow, but the way my boyfriend makes it. Let it 9 hour simmer, the best thing is to see him cooking actually. An amazing glass of red wine, from the brand Ceasar. Then with the meat some smashed cauliflower. The dessert I want to have something, anything with chocolate. See the smile of my child
See the northern lights
Feel a kiss on my cheeks
The smell of leaves and the wood on a warm summer day in the forest
Taste a piece of excellent chocolate Smell my child her skin and hair Hear my own child laughing Smell the parfum of a woman Smell the forest at night Feel my own boobs
Smell / Taste /Feel Anna Kendrick’s taint sweat Taste /pussy Smell a woman See the sunlight falling trough the leaves
Feel my own face Taste my fathers gado gado See the night sky Feel a dog Smell the salty windy air at sea Taste a Baba Ganoesj salad
Taste a 100 courses diner See my own face
Hear my cat purr Feel someone else’s hand
See the face of a beautiful woman
Taste some feta
Hear the voice of a woman telling me that everything will be fine
The one you love
Feel the cheeks of a beautiful woman
TARTE INFINIMENT CITRON
Taste a peach while on LSD
Smell my best friends house
Smell the winter night
See the sunset in the sea
Feel the rain on my naked skin while I’m swimming
Smell weed Taste something really gross so I wouldn’t miss it that much
The sound of foot steps on the stairs
Smell the forest
Taste Jopi Saus
Taste cholocate mousse cake
I want to hear laughter
Taste a hamburger
I want to smell my home
Taste French Cheese
I didn’t want to give them rules, just make them think about it.
Now I have to make this last supper.
nd then I figured it out for myself as well. You know the basic thing you have to remind yourself of is that you won’t die, so it’s not like your memories are gone. Or whatever happens when you die. I don’t know, let’s not think about that now, maybe next time. I would still have my memories, so then what do I enjoy the most? What makes me happy or triggers me. I mean for me that is where this whole project in the end is about, giving yourself a little peace of mind. That you can say goodbye to something you care about for so long and you have to let it go. You don’t do that, or I won’t do it, with something upsetting. For me it feels like this question is the very upsetting. What would you miss the most? The first thing that pops in your head is loved ones, your family, your friends, the love of your life even. Those things are where your heart would be in the first place. Only if like I said, your hart will not stop beating when you become blind. What I needed was something to enjoy with my eyes. I I I I I
want want want want want
to to to to to
see the milky way smell my childhood hear my favourite song taste a mojito feel warm water and sand
That would make me happy for the last time.
I think this book functions as a small road trough my thinking process. It's difficult to write down how every thought exactly happened. But this is pretty accurate. The material I used in this book is there to illustrate the making process of the supper.
Words and thoughts on the question: What would be the last supper for your senses?