Alice (II)

Alice was born with Down’s syndrome, but she is no different to any other little girl. She feels what we all feel. She needs what you and I need. 

We hadn’t been planning on another baby, and I was not prepared for how I would respond after Alice was born. She did not feel like my other children, and part of my instinct was to pull away from her. I was fraught with anxiety; I once dreamt Alice was swaddled in a blanket and I had forgotten all about her. Alice was so small, but I knew she could feel my rejection. I was deeply sad that I could not immediately love my child – I wanted to make our relationship better, and the responsibility lay with me.

This photograph was taken last spring, in the midst of a virus. Alice is vulnerable to sickness, and when she is ill, she becomes very ill, very quickly. She has had pneumonia twice this year, which means the whole family is consumed for the duration with anxiety over her health. Life comes to a standstill during these periods. I can spend an entire week just sitting with her, tense with worry. The moment the illness breaks, life returns to the house. 

She had been sleeping on the sofa. For a very brief moment, she sat upright and looked right through me. I remember the spring light and a strand of hair against her skin; I wanted to move it, like an irritation. I felt what it must be like to be Alice in that moment.  

You get a sense in this picture, I think, of Alice’s ease in making meaningful contact with other people. It is uncomfortable for most of us to be seen or witnessed by others; we can be fearful of what we think others will see in us. Alice is oblivious to that. She is free of judgment. Sometimes, it can feel like she is all-seeing.

Alice is wilful and determined, like me. She thrives on physical intimacy and is not afraid of giving or receiving it. She demands connection with people. She’s often very capable of choosing someone to connect with deeply. She usually has a strong impact on them.

When I was pregnant with her, we got a call from the hospital informing us our baby had a one in 30 chance of having Down’s syndrome. The language of risk was used as a matter of course, the underlying assumption being that we would want to have further tests; that, inevitably, we would want to terminate our pregnancy. There was not a single positive conversation with doctors or staff at the hospital, no discussion about Down’s syndrome, of how things might work out or how we might prepare.

Once Alice was delivered, the mood worsened. She was talked of as a medical condition, a diagnosis, a statistical failure of medical practice. I’ve learned since that 92% of babies with Down’s syndrome are terminated at the pre-natal screening stage. Prior to the introduction of such screenings, many children like Alice were severely marginalised, and often institutionalised, with little or limited medical care. 

I no longer see Down’s syndrome. I just see Alice. I still have to manage my expectations. Having a child like Alice means I can’t assert my authority as a parent. Alice is Alice. She will develop in her own time, and if anyone wants her to be anything other than who and how she is, they will achieve nothing at all. This can feel frustrating at times, but then parenting any child has its frustrations. 

Photographing Alice has helped me shine a light on why I struggled to love her, all the fear and uncertainty I felt. She has guided me to what needed to be expressed. I always knew she loved me, it was never about that. It was about me needing to fall in love with her – and I did, unconditionally.

by Sian Davey (2015)

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photographs by Sian Davey via and via

Alice (I)

This series is an illustration of family life — all the tensions, joys, ups and downs that go with the territory of being in a family. My family is a microcosm for the dynamics occurring in many other families. We are no different. As a psychotherapist I have listened to many stories and it is interesting that what has been revealed to me, after fifteen years of practice, is not how different we are to one another, but rather how alike we are as people. It is what we share that is significant. The stories vary but we all experience similar emotions. We are all vulnerable to feelings of anger, grief and depression. The list goes on…  

My daughter Alice, born with Down’s Syndrome, is no different to any other human being. She feels what you and I feel. However, our society does not acknowledge this and her very existence is given little or no value. Alice has entered a world where routine genetic screening at twelve weeks gestation is thrust towards birth prevention rather than birth preparation. Whilst we make our selection and decisions in private, the effect on society is that 92 percent of Down’s Syndrome babies are terminated at the pre-natal screening stage. Indeed, prior to the introduction of screening, children such as Alice would have been severely marginalized and ultimately institutionalized and given little or limited medical care. 

I was deeply shocked when Alice was born as an ‘imperfect’ baby. It was not what I had expected. Our first experiences in hospital did little to diffuse this. The pediatrician pulled back her legs, pushed her thumbs deep into Alice’s groin, and promptly announced that we should take Alice home and treat her like any other baby. But she didn’t feel like any other baby, and I was fraught with anxiety that rippled through to every aspect of my relationship with her. My anxieties penetrated my dreams. I dreamt that Alice was swaddled in a blanket and that I had forgotten all about her. I unwrapped the tight bundle that she was nestled in, to feed her, only to discover her body was covered in a white fluid — a fluid of neglect; and yet I was unable to feed her, unable to respond to her basic needs. 

On reflection I saw that Alice was feeling my rejection of her and that caused me further pain. I saw that the responsibility lay with me; I had to dig deep into my own prejudices and shine a light on them. The result was that as my fear dissolved I fell in love with my daughter. We all did. 

I wonder how it might be for Alice to be valued without distinction, without exception and without second glance. 

This project is for her, for Alice.

by Sian Davey, series "Looking for Alice"

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photographs by Sian Davey via and via and via and via and via aand via 

Drag Syndrome

The starting point is the art.
Before Downs Syndrome,
before extra chromosome, before disability,
before anything.
artists

Drag Syndrome is a London-based collective that uses the power of drag to promote "a message of radical acceptance for those with disabilities". All performers are artists with Down syndrome, each constructs a drag personality that helps make them visible, be judged on their skills rather than their disability, and - as director Daniel Vais says - celebrate who they are. Drag Syndrome now performs regularly at festivals in the UK and Europe and already has a large fan base (via).

"A producer had invited me to see a space in East London. So I went with Sara Gordon, one of our models and dancers, to the Christmas party last year. During the event there were performances by drag queens, which prompted me to ask Sarah if she would ever be open to experimenting with drag. And she replied straight away saying it would be absolutely fascinating. Right on the spot I came up with the title, Drag Syndrome. 

From there, I spoke with all the artists and asked them if they would want to try it. They were all very enthusiastic about it. But I told them that drag is not just a costume. Drag is about transformation. It's an art form. So the performers started researching it and each began developing their own characters.

Drag is all about empowerment and transformation. It allows you to be a bigger version of yourself and express yourself in a way that's more surreal. There's so much fantasy and freedom to it. This is an opportunity for our performers to express themselves in a way they don't usually get to on a regular basis, in these kind of settings. They love it. They are really enjoying what they do and the characters they play.

We've received big support from the drag world. All the biggest and most influential drag queens and kings have connected with us and supported us. Beyond this, many celebrities and really famous people, including top dancers and photographers, have been really supportive and understand that this is a special performing arts project.

This is just another layer of drag, and it gives our performers a chance to hang around with young audiences and be a part of arts and culture, which is what they really want. It allows them to show their talents. This isn't really a social project, but we do give opportunities to performers and artists who have Down syndrome and put them into a mainstream context. Yes, these are artists who have Down syndrome, but it's not the main issue. Audiences see beyond that. That's why we get loads of great responses and people really enjoy it. The extra chromosome is only a bonus."

Daniel Vais

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photographs via and via and via and via 

"Everybody’s looking at me."

Anna Grevenitis, a French photographer living in the U.S., has a son and a daughter, Luigia, 16, called Lulu. Although Down syndrom is not rare, being in public with her daughter still brings "a less welcome form of attention". From a certain age on, Lulu started noticing this attention and, depending on her mood, either reacted saying "Everybody loves me. Everybody's looking at me." or "Everybody hates me. Everybody's looking at me." Her mother reacted with a stare of her own.

In her series, Grrevenitis directs "a defiant gaze toward the camera, while her daughter goes about the daily routines of a teen-age girl". She presents Lulu to the viewer, however, on their own terms defending her from unwanted judgment. Her series is an ordinary portrait of adolescence unlike the stereotypical portrayal of children with Down syndrome usually tending to show an "angelic, saccharine, and unmolested soul" or a "burdensome, unwanted, and ultimately pitiable victim" (via).

"When my daughter was born, I was told that she had the “physical markers” for Down syndrome. A few days later, the diagnosis of trisomy 21 was confirmed with a simple blood test. Today, fifteen years later, Luigia is a thriving teenager, yet these “markers” have grown with her, and her disability remains visible to the outside world. As we try to go about our ordinary lives in our community–getting ice cream after school, going grocery shopping or walking to the local library–I often catch people staring, gawking, or side-glancing at her, at us. Even though their gaze feels invasive, I perceive it as more questioning than judging, at least most of the time. With this on-going series REGARD, I am opening a window into our reality. To emphasize control over my message, these everyday scenes are meticulously set, lit up; they are staged and posed. The performers are my daughter and I because, as her principal caretaker, particular attention is directed at me each time we leave our home. The self-portraits are purposefully developed in black and white, for by refusing the decorative and emotionally evocative element of color, I aim to maintain a distance between us and them. The composition of the photographs expresses routine, domestic acts in which I address the viewers directly: look at us bathing; look at us grooming; here we are at bedtime; this is us on a random day at the beach. In each scene, the viewers are plunged into the outside perspective. At first glance, it may seem that I am offering us as vulnerable prey to their judgement, yet in fact I am guarding our lives, and the viewers are caught gawking–my direct gaze at the camera. Through the direct, return gaze, I am not only the one in control, but I am also the one the viewer eventually focuses on. Image after image, I am emerging center-stage as I am asking to be seen. A shift in perspective is imposed. Because of the otherness of our circumstance, I know I am being scrutinized, and my own narcissistic inkling is surfacing. In the end, I am not so much interested in answering the viewers’ questions anymore as I am leaving them with mine: what is this saying about me?" Anna Grevenitis

photographs via

The Radical Beauty Project

Fashion and art photographers shoot photographs for the Radical Beauty Project, all of them for free, the models all have Down's Syndrome. The collection - a photography book - does not aim to be a "charity coffee-table" one but high art (via).

“I didn’t necessarily want crowd-pleasing images. Some people find that disturbing. They don’t want to empower people with Down’s syndrome. They don’t see them as powerful people. So they resist it.”
Daniel Vais, creative director

“This is hardcore art. It’s not charitable or cute. We don’t want to play that card. This is avante-garde art and fashion.” 
Daniel Vais 

photographs of Lily D. Moore by Elisaveta Porodina via and via

Chosen (not) to be

This series is part of the Radical Beauty project, an international photography project aiming to give people with Down’s Syndrome their rightful place in the visual arts. The young women I worked with, shared a strong will to succeed. To prove themselves. It must be beyond frustrating to be underestimated all the time. With ‘Chosen [not] to be’ I reflect on their reality - the barriers they face, society’s refusal to see their capabilities, the invisibility of their true selves - and translate their experiences visually.



In the Netherlands, people with Down’s Syndrome have collected their experiences in a book, called Zwartboek (Blackbook). They have offered this book to the government as a catalyst for change.



Reading the collection of stories in this book broke my heart. There is so much misinformation. This misinformation leads to misconceptions and widely held preconceived notions which profoundly impact the lives of people with Down’s.



Much to the frustration and pain of people with Down’s Syndrome and their families, there is a fundamental discrepancy between the capabilities of people with Down’s, and society’s view of them.



These feelings are expressed into the images of this series. My goal was to subtly convey the message while at the same time showing their individuality, their beauty and their essence. The fine line between making them truly visible, while at the same time conveying the restrictions and barriers placed upon them.

With much love to Juliette, Margot, Emma, Eveline and Tessel.
Marinka Masséus

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photographs via

Meeting Sofie

"How far should a pre-birth diagnosis go? From an ethical perspective, prenatal tests are quite controversial. Critics see them as a targeted search for sick children in their mothers’ wombs - for embryos with Down syndrome. They also question what this medical control means for people living with this condition - for their rights to assistance, participation and inclusion. Inclusion means giving people with handicaps a presence and visibility within society - and photography is one means of doing so.



I started taking pictures of Sofie young woman with Down syndrome back in 2017 when she was 18 years old. She just finished school and spent almost every day on the family estate in Eilenstedt (Germany). Sofie comes from a family of famous antique dealers and grew up in the magical atmosphere of this farm. Visiting Sofie and her family for over four years, I experienced their everyday lives and shared the highs and lows of her first steps into love. At that time Sofie was in that awkward yet beautiful and thrilling age of transition from a girl to a woman, when every feeling is extremely intense and love seems to be the main purpose of life. Sofie has a very strong bond with her mother Barbara. Barbara was 39 when Sofie was born, at home on Christmas night 25.12.1998. It was three weeks later during a routine doctor’s appointment when she found out Sofie had Down syndrome and should have required an operation on her heart.



With my series 'Meeting Sofie' I want to show the beauty of "being different" and thus to contribute to deeper acceptance, integration and love among us humans."
Snezhana Von Buedingen



photographs via

Captain of Dance

In January 2019, Andrew Self - a "Captain of Dance" - competed on BBC's show "The Greatest Dancer", a competition "open to children from 7 years and above, with no upper age limit" (via). Andrew fell in love with dance when he was 11 (via) and taught himself to dance (via). Having Down Syndrome does not stop him from doing anything.



::: The "No, I don't cry, you cry"-audition: WATCH

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photograph of Andrew Self via

The Peanut Butter Falcon

"A young boy with Down syndrome runs away to fulfill his dream of becoming a professional wrestler" (via).



Zack Gottsagen is an actor, recipient of 2018 Quincy Jones Exceptional Advocacy Award and the first person with Down syndrome to be fully included in the Palm Beach County School district (via).

In the movie, Zak escapes his residential nursing home to follow his dream of training under his professional wrestling idol. Along the way, Zak encounters Tyler, “a small-time outlaw on the run”. The pair work their way through a series of obstacles while convincing Eleanor, the nursing home employee tasked with bringing Zak back, to join the adventure.

“The Peanut Butter Falcon,” written and directed by Michael Schwartz and Tyler Nilson, was created for Gottsagen. Schwartz and Nilson met Gottsagen at a disability acting camp. Gottsagen challenged the filmmakers to create a role for a character with Down syndrome since initially, they said they didn’t see any films that starred people like Gottsagen. (shortened version, via)

Solo los Rebeldes Cambian el Mundo

Downeate created the fantastic clip "Libertad" reminding us that teenagers are teenagers, no matter whether with or without Down syndrome. The video shows Valentin who decides to break out of daily routine and to do things that make him feel free.




More beautiful videos:

::: Día de Picnic: WATCH
::: Domi La Manipuladora: WATCH
::: Angelitos: WATCH

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image via

Not Special Needs

"Special needs? Really? It would be 'special' if people with Down syndrome needed to eat dinosaur eggs. That would be special."



The "Not Special Needs" campaign was introduced for World Down Syndrome Day 2017, launched by CoorDown, Italy's national organisation for people with Down syndrome and developed by Publicis New York. It stars Lauren Potter, a popular actress with Down syndrome (via).

“The term ‘special needs’ is a euphemistic way to speak about persons with disabilities and their needs. The reality is people with Down syndrome do not have different or special needs, although they may sometimes meet those needs in different ways, they have the same needs as all of us… jobs, friends, love and simply the need to be seen and treated equally. We are so proud of this work for our incredible partner CoorDown who does so much great work courageously challenging preconceptions, and we hope our film maybe goes a little way to changing how people view those with Down syndrome.”
Andy Bird, chief creative officer Publicis New York

Wil Can Fly

"When we brought Wil home from the hospital 17 months ago we were'nt quite sure what the future would hold for our family. Not soon after having him home we all started to recognize that Wil had a light about him that changed our perspectives on many things. Im happy that I was inspired enough to capture some small glimpses from the beginning of our journey down a new road." (via)



William "Wil" Lawrence is a little superhero with Down's Syndrome and the ability to fly. A while ago, his father, Alan Lawrence, started taking pictures of him showing him in situations in which little Wil seems to be flying.



When Alan Lawrence first learned about his son having Down's Syndrome, his attitude was different:“It felt as though he would put limits on what I would accomplish, what my family would accomplish." (via)
“While looking into his eyes everything started to go into a dream state <…>My emotions of joy paused as everything around me seemed to slow down. The nurse may of been talking to me but I wasn’t listening." (via)



Alan Lawrence was wrong. And he started his series "to show the world that having a child with Down's Syndrome can be a blessing." (via)



"Wil has always wanted to fly ever since he learned to roll on his stomach." (via)



"He likes to throw his arms behind his back and wiggle his feet and my family and I have always joked that he will one day take off." (via) Wil's crawling style made him look as if he were preparing for flight: "It's just an ongoing joke in the family that one day he is going to take off and fly." (via)



"So being a photographer I decided to make that a reality." (via)



"I took Wil outside and did a composite photo of me holding him up and then photoshopped me out of the picture." (via)



"We realise Wil is still young, but we know that even though he has Down Syndrome it doesn't mean he is limited. He will be able to do anything he puts his mind to."  (via)



“He is just like any other kid his age it just takes a little longer for him to reach some of those average mile stones. We know as a family that he will be able to do anything he puts his mind to. Wil Can Fly.” (via)



"I want other parents just starting out this journey ... to have a more positive outlook on it than I did." (via)



"This project is a way for us to show how much our son has blessed our family." (via)



"He's not a burden, he hasn't limited us. He's opened the door to so many new things, to new experiences." (via)



photographs by Alan Lawrence via and via and via and via and via and via and via and via and via and via and via and via and via and via and via

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Hundertdreiundvierzig Zentimeter

Hundertdreiundvierzig Zentimeter, one hundred and forty-three centimetres, is the BA-thesis of German photographer Sabine Lewandowski (via), one of the Sony World Photography Awards finalists. The photographic series documents her close relationship to her younger sister Marina, 143 cm tall and born with Down syndrome (via).



"The photo series 'One Hundred and Forty Centimetres' raises questions about our relationship with the stigma of 'impairment' and the technical possibilities to determine the value of a life before birth. The series addresses social issues everybody finds difficult to answer: how do we deal with strangeness and unfamiliarity within the frame of what society calls 'normal'."
Sabine Lewandowski 



In her exhibition, Lewandowski combines the photographs of her sister with statements against people with Down syndrome. Quotes are, for instance: "I hate people with trisomy 21. They all look the same and are not able to survive." (via)



Lewandowski about living with her sister Marina: "Marina and her way of seeing things enrich my life. Just like any other person she has good days and bad days. (...) She keeps reminding me of what the real values in life are." (via)




According to a study of four time periods, the average height of adult women with Down syndrome used to be 143 cm and increased in the past years (Lahtinen et al., 2007).



- photographs via
- Lahtinen, U., Rintala, P. & Malin, A. (2007). Physical Perforamce of Individuals With Intellectual Disability: A 30-Year Follow-Up. Adapted Physical Activity Quarterly, 24, 125-143.