At UN #CSW60
Two Sisters of Frida were at New York city for the ~UN Â Committee for Status of Women #CSW60 – here are some of the sessions we took part there.
At Sustainable Development Goals or Sidelining Disabled Girls? Making SDGs Stand for All Women and GirlsÂ This side event was sponsored byÂ Women Enabled International, Sisters of Frida & Women with Disabilities India Network
Commission on the Status of Women â CSW60 Side Event
Title: Sustainable Development Goals or Sidelining Disabled Girls? Making SDGs Stand for All Women and Girls
Date and Time: Thursday, March 17 2:30 PM
Location: Church Center of the United Nations â Boss Room, 770 United Nations Plaza New York, NY
The SDGs offer a valuable platform to advance dialogues with States around key areas that impact the lives of women & girls. Yet, despite accounting for almost one-fifth of all women worldwide, disabled women and girls receive scant attention. As the global community undertakes the crucial task of identifying indicators to monitor progress toward the realization of the SDGs & hold States accountable for these commitments, it is essential that this process includes the voices of disabled women Â which reflects their experiences of intersecting forms of discrimination. This panel addresses four SDGs that bear on the rights of women with disabilities: Goal 1 (Poverty), Goal 3 (Health), Goal 5 (Gender Equality), & Goal 16 (Peace & Justice). Panelists will discuss barriers that disabled women Â face in realizing their rights as they relate to these goals & will address how SDG indicators can better reflect the realities of disabled women Â moving forward.
Location: Church Center of the United Nations â Chapel, 770 United Nations Plaza New York, NY
Alexia Manombe-Ncube (Namibia)
Alexia is the Deputy Minister of Disability Affairs in the office of Vice President, Namibia. Recently appointed by President Hage Geingob to handle the affairs of physically challenged people, Manombe-Ncube has appealed to stakeholders to highlight the plight of the countryâs disabled people in order for her to realise her ministerial declaration of intent. She also urged stakeholders to apply all their energy towards the empowerment and development of the disabled and specifically to close the gender equality gap.
She champions those in the rural areas saying disabled are have less resources and left to crawl because they do not have wheelchairs like people in the cities. Alexia will be speaking on the status of disabled in Naimbia and her own empowerment as a minister.
Lucia currently works as an advocate for disabled people who are victims of domestic violence. She is also a Disability Rights Advocate where she assists people to access care packages, to be re-housed, to apply for benefits and to appeal against decisions they are not happy with. She has a masters in Global Citizenship, Identity and Human Rights from the University of Nottingham. In 2008 to 2010, she worked with disabled peopleâs organisations in Guyana where she provided disability equality and project management training to many disabled people throughout the country. She is particularly passionate about ensuring disabled women feel empowered and equipped to make their own choices. Lucia will be speaking about disabled women caught up in domestic violence in the UK.
Michelle (UK) is a visual artist and disabled activist with lived experience of mental-distress for over three decades. She set up and ran a disabled lead arts organisation changing the way disabled people were perceived in the main stream.
She has worked with womenâs organisations and on a telephone help line for women affected by violence, and with women from a variety of cultures including the Poppy Project which supports women who have been trafficked to the UK, the Diane project for Iranian women who need a safe place to be due to violence. Michelle will speak about her work with mental health survivors and their struggle for empowerment.
Suzannah is the Legal Advisor for Women Enabled International. Her work focuses on legal advocacy with the United Nations and other international and regional forums to strengthen human rights standards on the rights of women and girls with disabilities. Prior to joining WEI, Suzannah was the International Womenâs Human Rights Clinical Fellow at CUNY School of Law, Legal Adviser for International Advocacy at the Center for Reproductive Rights (CRR), and a Human Rights Fellow with VIVO POSITIVO in Santiago, Chile. She is currently a member of the International Human Rights Committee at the New York City Bar Association. Suzannah received her J.D. from Columbia Law School and her B.A. in Social Anthropology from Harvard University. Suzannah will be speaking on how different legal instruments can be used to support empowerment of disabled women especially with Women Enabled Internationalâs work.
Sustainable Development Goals or Sidelining Disabled Girls? Making SDGs Stand for All Women and Girls
Please come to support usÂ
Commission on the Status of Women â CSW60 Side Event
Title: Sustainable Development Goals or Sidelining Disabled Girls? Making SDGs Stand for All Women and Girls
Date and Time: Thursday, March 17 2:30 PM
Location: Church Center of the United Nations – Boss Room, 770 United Nations Plaza New York, NY
The SDGs offer a valuable platform to advance dialogues with States around key areas that impact the lives of women & girls. Yet, despite accounting for almost one-fifth of all women worldwide, women and girls with disabilities receive scant attention. As the global community undertakes the crucial task of identifying indicators to monitor progress toward the realization of the SDGs & hold States accountable for these commitments, it is essential that this process includes the voices of women with disabilities& reflects their experiences of intersecting forms of discrimination. This panel addresses four SDGs that bear on the rights of women with disabilities: Goal 1 (Poverty), Goal 3 (Health), Goal 5 (Gender Equality), & Goal 16 (Peace & Justice). Panelists will discuss barriers that women with disabilities face in realizing their rights as they relate to these goals & will address how SDG indicators can better reflect the realities of women with disabilities moving forward.
Asha Hans (India) – Goal 16 (Peace & Justice) â impact of conflict on women and girls with disabilities, especially those who are refugees
Eleanor Lisney (UK) – Goal 1 (Poverty) â impact on women with disabilities of government program cuts
Andrea Parra (Colombia) – Goal 3 (Health) – sexual and reproductive health and rights, including forced sterilization and access to health care for women and girls with disabilities
Adaobi Egboka (Nigeria) – Goal 5 (Gender Equality) â Gender-based and sexual violence and access to justice for women and girls with disabilities
Stephanie Ortoleva (USA) â Welcome and Conclusion
Suzannah Phillips (USA) – Moderator â
Women Enabled International, Sisters of Frida & Women with Disabilities India Network
For more information: Email Info@WomenEnabled.org or firstname.lastname@example.org
Sisters of Frida at #WOWLdn
This year is amazing! so many of us will be at the WoW festival this weekend! do go along and support -if you can get a ticket!
One in five of us is disabled â so why do we try to hide it from our friends? How do we âcome outâ as disabled women?
Venue Level 4 Blue Bar at Royal Festival Hall
TimeÂ 11:15am â 12:15pm
Date Saturday 12 March 2016
One in five of us is disabled â so why doÂ we try to hide it from our friends? How doÂ we âcome outâ as disabled women?Â Four women tell their stories. SpeakersÂ include Deborah Williams, DiversityÂ Manager BFI; Dieuwertje Dyi Huijg,Â Visiting Lecturer, SociologyÂ at University of Westminster andÂ Rebecca Bunce, human rightsÂ researcher and campaigner.
Chaired by Zara Todd, disability rightsÂ campaigner and activist.
In partnership with Sisters of Frida.
Venue St Paulâs Roof Pavilion at Royal Festival Hall
Time3:45pm â 4:45pm
Date Saturday 12 March 2016
Examining womenâs health Heart disease kills more women than men each year, fewer women than men survive a heart attack, so why do we hear so little about it? In mental health, women are more than twice likely than men to have depression and less likely to be taken seriously. How does gender affect physical and mental health care and what can we do to change the status quo? Speakers include Bridget Hargreaves, author of post natal depression memoir Fine Not Fine; Dr Victoria Showunmi, lecturer on migraines at the UCL Institute of Education.
Chaired by Annabel Crowley.
Venue St Paulâs Roof Pavilion at Royal Festival HallÂ
Time2:15pm â 3:15pm
Date Saturday 12 March 2016
Come and find out why you should give a shit about toilets. From women always having to queue, to the lack of toilet facilities in the developing world having a devastating effect on womenâs safety, what can toilet provision tell us about gender equality? Come and join the grand doyenne of public toilets Prof. Clara Greed; award winning writer and feminist Beatrix Campbell; Changing Places campaigner and disabled feminist Sarah Rennie and periods activist and founder of #periodpostive Chella Quint to discuss. Beware â there may be toilet humour.
Chaired by New Statesman Deputy Editor, Helen Lewis.
- Type of event
- Talks and debates
- Running Time
- 60 mins
Venue The Clore Ballroom at Royal Festival HallÂ
Time1:15pm â 2:15pm
Date Sunday 13 March 2016
Studies show that women still do twice as many chores as male partners, even when they work full-time. From housework to âemotional labourâ, is this one of the last frontiers of normalised gender inequality? And how can we level the playing field? Speakers include counseller and lifelong feminist Pauline Latchem, and teacher and writer Lola Okolosie.
Chaired by Laura Bates, founder Everyday Sexism Project.
Venue Level 3 Foyer (Green Side) at Royal Festival HallÂ
Time4:00pm â 5:00pm
Date Sunday 13 March 2016
What does the portrayal of black women in popular culture tell us about race, sex and power? Join journalist and campaigner Reni Eddo Lodge, visual sociologist Emma Dabiri, activist Becky Olaniyi and playwrite Adura Onashile as they discuss the joys and challenges of being a black feminist.
Chaired by Senior Programmer, Contemporary Culture and journalist Hannah Azieb Pool
Rebecca and Zara at Youth Action Festival, Dec 2015
We were asked if Sisters of Frida works with young people and yes, we do. Becky Olaniyi was very much in the picture as part of the Steering Group until she rolled into university and have too much on with university work and getting used to campus life.
“... but I wanted to say a huge thank you for everything you did for the Youth Action Festival in December. I wanted to thank you and your colleague for giving up your Saturday and providing such a meaningful contribution to the day. We really could not have made the event the success it was without you.
Overall the event was a huge success. Please do have a look at the quotes from evaluation forms on the attached letter that give a flavour of what an incredible impact the day had on participants.
We also used the solutions that young people put forward during the day and the learning from the day to shape the policy and ideas for our Learn Without Fear UK campaign this year. You can see our campaign and policy content on our web pages and in articles in the press Daily Telegraph Wonder Women section, Metro.co.uk, Huffington Post, Good Housekeeping and the Daily Express.
Thank you Zara and Rebecca!
Photo Credit: Plan International//Jessica McDermott
Sisters of Frida and CSW60
Sisters of Frida will be at the CSW60 – the sixtieth session of the Commission on the Status of Women.
See the NAWO’s Report (Pdf) on Sustainable Develpment Goals (SDGs) European Indicators (28th Jan 2016)
Conference Room B – Conference Building (max. capacity: 53)
A multi-stakeholder informal discussion to discuss and elaborate key priorities for women and girls with disabilities in the context of the operationalization of the 2030 Agenda for Sustainable Development.
UNICEF House, 3 UN Plaza
CSW Alliance events
UKÂ Â Â NGOÂ Â Â briefingÂ Â Â meetingÂ Â Â 9-10Â Â Â BIC
UKÂ Â Â GovÂ Â Â briefingÂ Â Â 6-7Â Â Â UKÂ Â Â Mission â firstÂ Â Â week
DisplacedÂ women andÂ girlsÂ âÂ the price of genderÂ (NAWO)
Â Wednesday 16 March
Time: 2:30 PM Venue: CCUN Boss
Sustainable Development Goals or Sidelining Disabled Girls?: Making SDGs Stand for All Women and Girls (SoF, Women Enabled Int)
3.00-Ââ4.30Â Â Â UKÂ Mission Redefining feminism: the voice of young womenÂ – SDGs and VAWG what is the legacy? (NAWO)
16:30-Ââ18:00Â Â Â CCUN Second FloorÂ âClosing the Gender Gap – From the World Humanitarian Summit to implementation’ (CARE, Government of Jordan, CSW Alliance)
Â Thursday Â 24 Â 12.30 Â Chapel Â CCUN Â
A Â Dialogue: Â Survivors Â in Â a Â disabling Â environment: Â what Â does Â empowerment Â ofÂ disabled Â womenÂ mean Â globally?Â Â (SistersÂ ofÂ Frida, Â Women Â Enabled Â International, Â NAWO)
Sisters of Frida at the WoW Festival 2016!
We are really excited that many Sisters of Frida will be speaking at the WoW Festival 2016. At the moment we can confirm
Saturday 12th 11.30 -12.30
Coming Out as Disabled: Body Image, Labels and Denial of Disability
One in five of us is disabled â so why do so many women try to hide their disabilities?
Zara Todd, Debs Williams, Rebecca Bunce and Dyi Hudjg
Saturday afternoon with Sarah Rennie in
Toilets are a Feminist Issue
Ever been frustrated by the queue for the ladiesâ? Come and hear about how you can judge the gender equality of a nation by the state of its toilets. Led by the doyenne of toilet politics, Professor Clara Greed.
Sunday 13th 1.15-2.15, Pauline Latchem
‘Chore wars & domestic lives‘ –
this session is about the male/female split of domestic labour and whether or not this is one of the last frontiers of gender inequality.
Tickets can be bought online
The medical consequences of being told youâre terminal when all you are is disabled
Many thanks to the Crippled Bitch, Emily Wolinsky, for permission to reblog this.
I beg you to consider this analogy:
Imagine two children.
The first child is a child with a severe nut allergy. Letâs call her Lilianna. Lilianna, 95% of the time, is very healthy, happy, bright, and capable, but as soon as she encounters a nut, nut dust, or nut oils, this child goes into convulsions and is minutes away from death. This child needs life-saving injections delivered immediately to her system so she wonât convulse and/or go into anaphylactic shock. Lilianna needs accommodations at school, so teachers and staff are aware of her allergy. Special arrangements may need to be made during the day and after school so this child can safely participate and attend in activities. She may need to go to the doctor on a regular basis for treatments and therapies. Finally, Lilianna will have to learn to read labels, prepare and cook food differently, and advocate for herself for the rest of her life.
In the case of Lilianna, would you say that she is:
A. Terminally ill
The second child I want you to imagine is a child with a severe neuromuscular condition, like Spinal Muscular Atrophy. Letâs call her Sally. Sally, 95% of the time, is very healthy, happy, bright, and capable, but as soon as she gets a chest cold, she has a hard time coughing due to weakened muscles. This child needs life-saving pulmonary therapies delivered immediately to her respiratory system so she wonât drown in her phlegm. Sally needs accommodations at school, so teachers and staff are aware of her condition. Special arrangements may need to be made during the day and after school so this child can safely participate and attend activities. She may need to go to the doctor on a regular basis for treatments and therapies. Finally, Sally also uses a wheelchair and other equipment that allows her to move and be comfortable. She will have to advocate for herself for the rest of her life.
In the case of Sally, would you say that she is:
A. Terminally ill
Now consider your two answers. If your answer is B (disabled) for the first child, Lilianna, and A (terminal) for the second child, Sally, you are in the majority and Iâm very sorry to say, but you are ableist. I know, itâs hard to process that, but if itâs any consolation, itâs probably not your fault. After years and years of skewed media, pity pornography, and a telethon about kids with neuromuscular disabilities (NMD) deemed terminal in order to raise money to âsaveâ them with a cure, most people have arrived at the wrong answer to the questions above. Because of this stigma based from a foundation of medical model induced abelism, poor Sally is now facing an infinitely harder life as an adult than Lilianna is.
Fast-forward to little Sallyâs first sexual relationship.
Yeah, I said sexual. Jerryâs kids grow up and have hot sex.
Sally grows up and starts attending college. She meets a guy and they hit it off so well that soon they are like most college kids these days and having horny sex. All of Sallyâs friends tell her to go to Planned Parenthood to get on birth control. Oh wait, scratch that. Planned Parenthood is a dirty word for some reason, but thatâs another essay for another time. All of Sallyâs friends tell her to go to see her gynecologist to get on birth control. Sally doesnât want to get pregnant and sheâs embarrassed to talk to her parents about this guy sheâs fooling around with, so she makes an appointment and takes one of her girlfriends with her to see the a gynecologist for the first time.
Guess what happens?
The doctor enters the room and completely looks past Sally to her friend. When her friend tells the doctor that sheâs at the office to accompany Sally, the doctor looks at Sally dumbfounded. Sally explains that she has Spinal Muscular Atrophy, which is, âkind of like Muscular Dystrophyâ. She claims that even though she uses a wheelchair, is 65 pounds, and can barely move, she is sexually active and trying not to get pregnant. The doctorâs mouth drops and he thinks back to all those years of watching the Muscular Dystrophy Associationâs Labor Day Telethon. Wait, he thinks. Arenât these kids supposed to be dead already? Arenât they terminal? He figures Sally is an unusual case.
The doctor regains his composure and hands her an office dressing gown and a cup, tells her to go to the bathroom and provide him with a urine sample, return to the room, undress and get on the table. He says heâll be back in the room in a few minutes. Sally, already incredibly nervous, feels panic take over. She looks at the doctor and explains that she needs assistance getting on the toilet and the exam table. The doctor has a terrible back, and young Sally looks fragile with a back curved into an S shape and tiny bony frame. Heâd hate to try and lift her onto the table and hurt either of them. The doctor looks at her friend. The friend shrugs. Sally states that her friend cannot lift her. By this point, the doctor realizes that heâs just going to have to go by Sallyâs word. He asks her when her last period was. He asks her if she has used condoms. He decides to write Sally a prescription for birth control and tells her to start taking it the Sunday after her next period ends. He tells her that they can do her pelvic exam another time and suggests that next time she bring someone who can lift her on the table.
Three years later Sally finally gathers up the nerve to return to her gynecologist. Yes, the doctor prescribed her birth control for three years without ever doing a pap smear; ignoring protocols, but figuring that sooner or later this fragile girl would probably be too sick to have any fun. But when his nurse practitioner came into his office one afternoon and told him that Sally had called to make an appointment for irregular bleeding, after checking his file and seeing zero history other than a birth control prescription, he remembered her. This time he knew she would need to be examined. He got on the computer, went to the search box and typed, âmuscular dystrophy pelvic examâ – nothing. But he did see âspinal muscular atrophy cureâ, âSMA angelâ, and âmake a muscleâ. He typed in âmuscular dystrophy pregnancyâ – nothing. But he did see âdonate to save a lifeâ âgirl with terminal muscle illness chooses heavenâ, and âlive unlimited.â He figured heâd wing it.
Twenty-three year-old Sally arrived at her gynecologistâs office a few days later with her boyfriend and a personal care attendant. Her doctorâs office was still on the second floor and the elevator was still rickety and small. It smelled like the 1970s. When she got off the elevator and rolled to the door at the doctorâs suite, she tried to open the door, but it was very heavy and no automatic openers were visible. Thankfully, her attendant held the door open. She drove into the office and navigated through the tight waiting area with chairs pushed so closely together that strangersâ shoulders were overlapping. Sally approached the receptionist window, which was three feet higher than she was. The receptionist started asking her attendant questions and Sally spoke louder. The receptionist handed her boyfriend a clipboard and told him to fill out Sallyâs information for her. Just a few nights before Sally had celebrated her acceptance into a top law school, but the receptionist proceeded to call her âsweetieâ, and spoke slowly when addressing her. Sally knew right away that no one here had ever had disability awareness training.
Sallyâs boyfriend considered himself a patient guy. He loved Sally, but it was a little irritating that he had to take the afternoon off of work in order to lift her onto a table. He didnât tell her that though because he knew she was more than worried about the bleeding. When Sally was finally called back to the exam room, he realized that the five of them couldnât all fit in the room. First, he and Sally went in. They finally got the wheelchair angled right so he could cradle lift her out of her power wheelchair and put her on the table. Her attendant had to climb over the chair in order to move the wheelchair out of the room. Her boyfriend had to hold her still on the tall narrow table so she wouldnât fall off. Sally was sweating and shaking from nervousness, like a bird captured in the palm of a human hand. Her attendant quickly came over and both of them managed to get her undressed. She couldnât lie flat on her back and needed to rest on her right side facing the wall until the doctor was ready to see her. By the time she was in a resting position, Sally asked her boyfriend to leave the room. She was in tears. She said she wished she didnât need him to lift her because she really wanted to, âhandle her woman business alone.â Sallyâs attendant shooed him off and he went out to wait for their call. While he waited, he secretly checked his Tinder app.
The minute the doctor began Sallyâs exam he knew something was very wrong. The bleeding was bad. Her bloodwork from the lab had markers. She was in agony. Both of them were visibly uncomfortable. The doctor knew the probability of running more tests, especially after identifying a small lump in her left breast. He didnât want to scare Sally, so after she was dressed and back in her chair, he quickly listed off a number of labs and diagnostics she would need to get immediately. He referred her to his trusty diagnostic lab that he had used for the last twenty years and said they would take good care of her. When Sally left, she had a folder full of referrals. This meant more doctorsâ appointments. Her boyfriend said he couldnât take off work again. Her attendant said she would go, but didnât think she could lift her on the table safely. Theyâd work it out somehow.
Two weeks later, still bleeding, Sally exited another elevator that smelled like the 1970s. She went down another hallway decorated in dismal brown colors, which led to another heavy wooden door. Her attendant opened it. Sally recognized everything even though she had never been to this lab before. This familiarity was enough to make Sally downplay her symptoms that she listed on the form the receptionist handed to her attendant from âoftenâ to ârareâ. When she finally got into the mammogram imaging room and saw the machine that required someone to stand and lean into, she flashed back to three years before at the gynecologistâs office. The nurse handed Sally her exam robe and told her to undress. She asked her if she needed help standing. Sally looked at her attendant and looked back at the nurse. She wanted to scream with frustration, but this familiarity became the magical cure that she always needed. She said that she wouldnât be able to do the exam because the equipment wasnât accessible. The lab technician stared at her dumbfounded. âWell, why donât we get you to another lab, Sweetie?â The tech told her all about this lab sixty miles away. Accessible public transportation could drop her off forty-seven miles away.
Sally smiled and took the cure instead.
Sally went home that night, shredded her documentation on the different types of cervical and breast cancers her doctor gave her, cancelled her future appointments, told her attendant that sheâd be fine, told her boyfriend that the appointment went well, and bled daily until she died of cervical cancer six months later.
At her funeral, located at an inaccessible church, all the people who stood to speak about little Sally said that she was a SMA Angel who fought a brave fight against a terminal illness and lost like so many other angels. As mourners walked out of the funeral home, they wrote a donation check for a cure for Muscular Dystrophy. Â One mourner, a friend Sally made in high school, made sure to avoid the bowl of nuts sitting on the table near the donation envelopes as she headed toward the door.
Zara Todd: Disability rights campaigner in today’s Guardian!
Zara, one of our steering group and director, had an articleÂ ‘My biggest act of rebellion as a disabled person is living as I wishâ. But somehow that fact of being in Sisters of Frida got missed out in her impressive CV!
âWhat you fundamentally want when you are growing up is to fit in, and when you are constantly being told that you donât fit, there are two ways you can react,â says Todd. âOne is to take it all on board and end up hating yourself, and the other one is to fight it.â
For Todd, who has been a committed activist since the age of 11 when she began âall sorts of campaigningâ with a local charity focused on young people, it is quite clear which approach she took. While legal landmarks such as the Disability Discrimination Act 1995 (DDA) and the Equality Act 2010 have undoubtedly heralded improvements in the lives of younger disabled people, numerous obstacles remain to full inclusion, she says.
âThere have been massive strides, but one of the things that saddens me most about hearing children and young peopleâs experiences today is that a lot of the things that I experienced are still happening. I hear stories of young people who arenât even allowed out [during break times] because there are fears that they might be bullied or that something might happen to them and there arenât enough staff to facilitate it safely, so the only option is to keep them all in a room together.â
read the rest of the article at the Guardian.
Julia Daniels: On the Subject of Voice
Thank you to Julia Daniels for allowing us to reblog this.
For lots of other people, this âblog writingâ malarkey seems to come so easilyâŚ and writing as a way to express my emotions has become a very precious processâŚso why is it that the words; âdeveloping an on-line presenceâ seem to invoke such terror in me?
Maybe itâs because Iâm a bit of an introvert, naturally seeking enjoyment out of quieter pastimes like reading, yoga and, to be honest, blissfully day-dreaming about anything and everything. And maybe (I think this is the crux of it) it is due to the tangled mess of emotions that prevent me from speaking â the fear that I will have nothing of value to contribute to the world. Fear, also, of being exposed as the worthless waste that I know myself to be, or that living in this ableist world has taught me that I am. Fear of exposing myself to public ridicule by using the last remaining method I know to express my thoughts to a select few of my fellow academics.
For I do use writing to express myself, but always under the cloak and relative protection of academia, twisting and cultivating glimpses of my private, personal life into theoretical and political concepts in order to fool people into thinking that I do indeed have the flair and proficiency to be a successful PhD researcher. I fear that by writing a blog like this, I will be caught out, recognised as an imposter. Nevertheless, I feel the time has come for me to âspeak outâ, as it were.
Maybe for you to understand where Iâm coming from, I first need to tell you a little bit about my life. 15 years ago, I was involved in a car accident which left me with an assortment of broken bones to my upper body, a paralysed right arm, a severe head injury and damage to my vocal cords from incubation. 6 operations later, I still have a peculiar, breathy-sounding, very quiet voice. This compounds with the damage to the language and memory sections of my brain to make communication quite difficult for me. I have trouble processing auditory information, so it takes a while for me to fully comprehend what is being said in a conversation. Teamed with my natural tendency towards inhibition, this leads towards a potentially isolated existence. Whilst I do enjoy meeting new people, the dread of the, âwhatâs wrong with you, then?â questions, or even worse, the grabbing of the throat and trying to mimic my voice makes me want to SCREAM (but, ironically, I canât physically do that. Bugger). This makes me silently shrink away, back into the close circle of friends that I know and love.
It is taken for granted that the spoken voice is an accurate depiction of who you are as a person. If you are articulate, reasoned and comprehensible, this is taken as evidence that you are well-educated (whatever that means). This presupposition leaves no room for the disfluent speakers who stutter and stumble over their words, or for people like me whoâs words push and shove together in a maddening array to get out, leaving me so confused that none end up getting expressed. Is it possible to imagine a world where disfluent speakers are equally validated? Where the non-disabled population appreciates and respects that the answer to those, âwhat happened to you, then?â questions is something a disabled person might not actually want to go into on first meeting? We can hope, thatâs for sure.
By increasing the voices â however they are expressed â of disabled people, we can hope to destabilise hegemonic practices and move together towards a better world. I hope to contribute towards this move with my research. Â To be continuedâŚ
Â Julia Daniels is a PhD researcher at the University of Sheffield. 15 years ago she wasÂ in a car accident which resulted in a head injury and paralysed right arm, but it was years before she got involved with critical disability studies. Now her research interests involve feminist approaches to disability, Voice Relational Methodology and the biopolitics of disability.
Karin Hitselberger writes Why We Need to Talk About Kylie Jenner
I never thought I would say this, but we need to talk about Kylie Jenner.
We need to talk about Kylie Jenner posing on the cover of Interview Magazine in a wheelchair. We need to realize that this is not a simple conversation. I cannot talk about Kylie Jenner posing in a wheelchair in a simple way, because this conversation is anything but simple. This is not just about whether it is okay for able-bodied people to use mobility aids and disability as edgy props to shock people. No, this is about so much more.
Kylie Jennerâs photo and the conversation around it made me uncomfortable as a disabled person, but not just because she was using a wheelchair as a prop. I was uncomfortable when I read Tweets that suggested that the wheelchair was used as a prop to symbolize the âlimitationsâ Kylie Jenner experienced through being famous. That made my skin crawl. A wheelchair being symbolic of limitations, because the reality is that couldnât be further from the truth. We need to talk about what a wheelchair really is.
For me, a full-time wheelchair user, my wheelchair does not represent limitations and restrictions; it represents freedom. Without my wheelchair I wouldnât be able to leave my house, or even my bedroom. Without my wheelchair, I never wouldâve been able to go to school or study abroad in England. Simply put, without my wheelchair, I would not have a life. My wheelchair is not restricting; it is the thing that allows me to have some determination about the way in which I move through the world. I am limited by inaccessible environments, ableism, discrimination, and inadequate access to things like personal care, accessible housing, employment, and accessible, adequate medical care. I am limited by a world that does not see disabled people as being fully equal to non-disabled people. We need to talk about the limitations and restrictions that exist in the world for disabled people, in this case, wheelchair users in particular, but we also need to realize that it Is society and social structures that cause these limitations, not the wheelchair in and of itself.
We need to talk about Kylie Jenner. We need to talk about privilege. We need to talk about the fact that for Kylie Jenner a wheelchair was nothing more than an edgy, sexy prop. We need to talk about why I cringe every time I see an able-bodied person use a wheelchair in this way. I promise you itâs not because I donât think wheelchairs, and the people in them,can be beautiful and sexy, I know they can. Trust me when I say that I know that being in a wheelchair does not make you any less beautiful, sexy, or awesome than anybody else, but I also know that we live in a society that often times has a hard time seeing it. We need to talk about the fact that Kylie Jenner, a conventionally beautiful able-bodied woman who fits societal standards of beauty in almost every way is allowed to be sexy and edgy in a wheelchair, when that reality is so often denied to many wheelchair using women. We need to talk about the fact that disabled people, real disabled people, are still largely missing in media representation, especially media representation around beauty and sexuality.
We need to talk about the fact that Kylie Jenner is allowed to look edgy and sexy in a wheelchair but she has never had her ability to consent to sexual activity questioned because she was disabled. She has never had her sexuality interrogated by random strangers and put on display simply because she was sitting in a wheelchair. That wheelchair has never made her an item on a sexual bucket list that people want to try just to see what it would be like. Kylie Jenner has never heard the words, âYouâre so prettyâŚ For someone in a wheelchair.â Sheâs never experienced unwanted fetishization that seems to be so common for disabled women. Sheâs never had to balance feeling beautiful, Â and sexual and being sexually attractive in a world that sees you as anything but that.
Iâm not saying that Kylie Jenner has never experienced anything difficult in her life, but she is not experience what it is like to live and love as a disabled woman. Kylie Jenner has so many different privileges that I cannot list them all, and because of that she has a responsibility to realize that not all stories belong to her to use as edgy, provocative props. There is nothing wrong with realizing that wheelchairs can be beautiful, but one must also realize that they are not simple chairs.
Experiencing life in a wheelchair comes with a unique set of challenges that cannot be ignored. Being a wheelchair user means that you live in a world that is not set up for you. Being a wheelchair user means you experienced spaces on a daily basis where you are not meant to fit. Being a wheelchair user means learning to be proud of who you are in a world that tells you that you would be better off being almost anybody else. For most people, being a wheelchair user means learning to accept the scars or the spasms and the parts of your body that donât work the way everyone else thinks they should. For me, being a wheelchair user means learning to see beauty, strength, and yes, even sexiness, where most people see brokenness. It means learning to define myself outside of societal standards of beauty, and being comfortable with who I am regardless of what everyone else thinks.
We need to talk about Kylie Jenner because this is not really about her. It is about how disability can be considered cool when used as a prop, but so often the lives of actually disabled people are seen as a terrible fate. Itâs about the fact that so often disabled women are not given the opportunity to be seen as sexy and beautiful outside of the realm of fetishization. Itâs about the fact that it is difficult to see a wheelchair as nothing more than a prop when it is so intertwined with the way that many people experience and move through the world.
I am not ashamed to be in a wheelchair. Being a wheelchair user is a complicated and beautiful experience filled with challenges, beauty, and a unique perspective on life. I know beyond a shadow of a doubt that wheelchair users can be beautiful, strong, sassy, and sexy just like anybody else, and I don’t need Kylie Jenner, or any other able-bodied person to show me that.