Thank you to Sam Ambreen for allowing us to repost her blog. The article referred to in xoJane has been removed and replaced with an apology.Â You can read the original at webarchive. Sam is giving an important message here, especially for disabled women, with mental health issues and internalised lack of self worth.
I didnât read the xojane article doing the rounds, I found myself reeling from the headline as I tried to process what the author, Amanda Lauren, was saying. âMy former friendâs death was a blessing â some people are so sick, they are beyond helpâ.
It kind of speaks for itself, the author believes there are people who are a lost cause and they should die because it will make it easier for everyone else. She feels justified in saying this, reassured enough to publish her thoughts on a global platform. I am perturbed by people who make these controversialÂ statements, unconcerned by how they might be perceived, either possessing the hide of a rhinoceros or else feel that public opinion will sway their way (another painful reminder of the growing inhumanity weâve normalised against anyone considered âotherâ).
I have CPTSD, a condition I am stuck with for the rest of my life because it is as the name suggests, complex. I didnât ask to be repeatedly put in harmâs way, with no chance of escape, itâs just the life I was born into. I have explored in great detail the reasons I broke down, so that I can understand it was not my fault (when youâre mental youâre convinced you deserve it) and so that I could hope for a better future, one where I can have a fulfilling life, where I wonât be immediately at risk of a violent death.
My efforts to at least appear normal for the sake of ordinary people exhaust me, as anyone who suffers from a condition which impacts on their day to day dealings will tell you; how to not only stay alive, but to live well, to be fun and interesting and relevant. There can be no stone left unturned, no door chained and bolted in the recesses of my fragile mind, triggers must be neutralised as theyÂ arise. I frequently say things that make other people uncomfortable. I donât do it intentionally, itâs just my experience of the world is so far removed from the norm, I come across somewhat intense and affected. When people try to cover things up, or downplay the truth, I consider that to be gaslighting because it messes with my sense of reality. When I told the truth as a child I was disbelieved and punished.
My childhood was violent, my teens isolated, my 20s split entirely from reality. Amanda Lauren would probably say my life wasnât worth living. I believed that too, until just a year or two ago, when I suddenly remembered who I was before I became unhinged, a state I found myself in through no fault of my own. I remembered the things I was good at, the hopes I had as a pre teen, for university and beyond. This brought with it confidence and self esteem, qualities Iâd mislaid following my failings as an adult in a cishet white supremacist patriarchy. When I think back to the lowest period of my life, the monotony of anhedonia and how utterly convinced I was that my time on this earth was rapidly coming to an end it frightens me to think people like Amanda believe in the legitimacy of their own bigotry.
I never thought Iâd have the confidence to write my own blog, or weather a twitter storm. I didnât dare dream of friends and lovers who hear me, even when there are no words. Even when I was a bordering on psychotic, withdrawing from SSRIs, they kept me supplied with valium and kitten pics. Thatâs what friends do, Amanda, they love you despite your flaws. They understand there is nothing inherently wrong with you, that youâre a product of an unjust society and that to feel depressed or disconnected from the world is a sign youâre actually (most likely) a decent sort. I donât reject the mental ones, I welcome them with open arms, as they have me. I want to offer Amandaâs ex friend my condolences and wish for her to rest in peace. I am sorry you were stuck with people who didnât deserve you.
âIt is sometimes an appropriate response to reality to go insane.â Be wary of those who pretend they havenât a care in the world, more so the ones who genuinely donât.
The priority theme this year was the âWomenâs empowerment and its link to sustainable developmentâ with the review theme âthe elimination and prevention of all forms of violence against women and girlsâ.
Why go this year?
I have been involved in the National Association of Womenâs Organisations (NAWO) for the past two years and am a core member of the UK CSW Alliance for Sisters of Frida. As an activist for gender and disability equality, I realise the impact and importance of the UN instruments in telling the state parties, and in particular, our own government of the treaties they have signed and to remind them of the legal and moral obligations. This might seem to be a quixotic task but it is evident that if we are not visible at those international spaces, our voices and concerns will definitely not be heard. Our government can also continue its faĂ§ade of fulfilling its duties and pontificate about its role in global leadership where gender equality is concerned. As a disabled woman activist, the two themes of empowerment and domestic violence are of particular importance. I was asked to be in a side event on disabled women and the Sustainable Development Goals (SDGs) by Enabled Women International to speak on the first goal â poverty, and in particular the role of the UK government and the impact on disabled women of government program cuts. And since we will be there, we organized our own side event, âSurvivors in a disabling environment, what does empowerment of disabled women mean globallyâ?
While we might question the expense (self-funding) and putting ourselves through the grueling schedule of the UN event, my colleague and SOF Steering Group member, Lucia Bellini (who came with me) clinched the decision by remarking that if we, from the global north could not get there (funding, access reasons) how much more difficult it would be for the disabled women in the global south? Having that in mind, we asked other disabled women whom we know from other parts of the world, Jamie Bolling (ENIL), Dr Huhanna Hickey (NZ) and Khairani Barokka (Indonesia)Â to record short clips (2 mins) so that they could join our voices.
What did we do there?
Here is a report with videos of the side events we spoke at on the Sisters of Fridaâs, a disabled womenâs collective, website.
It seems needless to note but nevertheless, my main impression of being at the UN, apart from the security, is the networking and diversity of people you meet. There was also the back to back schedule of events and discussions to attend â at the main UN building and at the Church Centre (CCUN) across the street. Even a conference junkie like myself found it difficult to negotiate and pin down the relevant ones to get to.
One of the sessions I attended which I thought would be of particular interest was a session on media and technology and the intersections with violence against women â the Safety Net Project at NNEDV (National Network to End Domestic Violence)Â with sister programmes in Canada, Australia (WESNET) and Ireland. (but not in the UK, why not?) They had resources with safety tips on how to be safe online and WESNET developed Webinars for practitioners working with women experiencing technology abuse. I am also most impressed by the toolkit âToolkit on Eliminating Violence against Women and Girls with Disabilities in FijiâÂ from the Pacific region.
As part of the UK CSW Alliance, we had our own briefings every morning and evening and also worked with the Government Equalities office head of EU and international policy, Charles Ramsden. The principal output of the Commission on the Status of Women is the agreed conclusions on priority themes set for each year. This year it was on the empowerment of women. Agreed conclusions contain an analysis of the priority theme and a set of concrete recommendations for governments, intergovernmental bodies and other institutions, civil society actors and other relevant stakeholders, to be implemented at the international, national, regional and local level. The importance of this is where we can monitor and hold our government. I suggested adding âwomen with disabilitiesâ on an item about planning for natural disasters and emergencies â well, we always get left behind in times like those.
I met several interesting disabled women leaders, not least a commissioner for Gender Equality in South Africa, Ms Nomasonto Grace Mazibuko, with whom I had a very interesting conversation on albino-ism and the Namibian DeputyÂ MinisterÂ ofÂ DisabilityÂ Affairs, the Hon.Â AlexiaÂ Manombe-Ncube who wants to discuss about independent living in the UK. And of course fellow panelists Asha Hans (India), Adaobi Egboka (Nigeria) Â and Andrea Parra (Columbia) with the Enabled Women International, Stephanie Ortoleva. Daniela Bas, the Director of the Division for Social Policy and Development at the United Nations Department of Economic and Social Affairs.is a wheelchair user, was most approachable and friendly as were the disabled women from Fiji (on a session on domestic violence in the Pacific), Bangladesh, and Spain. It is clear that for an assembly as big as the CSW, there were not that many of us disabled women and our voices are very muted. It seems to me that we have to concentrate on the SDGs to make sure we are definitely not left behind in the âleaving no one behindâ aspiration.
Photos from the event are here (they are not in any order).
with Eleanor, Suzanna, Asha, Stephanie, Andrea and others before the panel session
The UK CSW Alliance with Charles Ramsden
–written by Eleanor Lisney
Eleanor is a founder member and coordinator of Sisters of Frida. She is an access advisor, an NUJ member on the New Media Industrial Council and the Equality Council. She is also on the British Council Disability Advisory Panel and the web team of the International Network of Women with Disabilities. She enjoys being on the EVA (Electronic Visualisation & the Arts) London organising committee.
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.
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.
Eleanor Lisney (UK) â Goal 1 (Poverty) â impact on disabled women of government program cuts –
Date and Time: Thursday, March 24 12:30 PM Location: Church Center of the United Nations â Chapel, 770 United Nations Plaza New York, NY
This panel will be discussing what would empowerment of disabled women mean locally, nationally and globally. We will try to include voices of disabled women (short video clips) from different parts of the world stating what it means to them.
We will use the Social Model of Disability; that is to say it is systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently), that disable us. We will also look at the different nuances of violence against disabled women, the different forms of abuse and how disabled women in particular are affected. How they survive inspite of having to face numerous challenges/barriers wherever they are in the world. Speakers 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 Bellini (UK)
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 Baharier (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 Phillips (USA)
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.
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.
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.
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.
UN Women, United Nations Inter-Agency Support Group for the Convention on the Rights of Persons with Disabilities (IASG)
Operationalising the 2030 Agenda for Sustainable Development for Women and Girls with Disabilities
18 March, 11:30 AM-12:45 PM
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 Disability and Protection Sections, the Global Partnership to End Violence against Children, UNFPA, Office of the SRSG on Violence Against Children, Global Partnership on Children with Disabilities (GPcwd) and the International Disability Alliance (IDA).
#ENDviolence Against Children and Adolescents with Disabilities
21 March, 01:00 PM – 03:00 PM
UNICEF House, 3 UN Plaza
As part of the campaign to #ENDviolence against children and adolescents with disabilities (launched on 3 December 2015) and to commemorate World Down Syndrome Day, UNICEF and partners are hosting a CSW side event on ending violence against children and adolescents with disabilities (with a focus on girls with disabilities).The event consists of: 20 minute performance of the play “Apple of My Eye”, an original play written by Tathiana Piancastelli, a 31 year old Brazilian artist with Down Syndrome. High-level panel discussion on violence, neglect stigma and discrimination against girls and boys with disabilities. âMore detail will be posted on http://www.gpcwd.org/endviolence.html closer to the event.
CSW Alliance events
EveryÂ dayÂ Â Â
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
TuesdayÂ Â 15Â Â MarchÂ 10.00 âÂ Â Â 11.30Â Â Â BIC
DisplacedÂ women andÂ girlsÂ âÂ the price of genderÂ (NAWO)
6-Ââ7.30Â UKÂ MissionÂ Ambassadorâs receptionÂ Invitation only Â Wednesday 16 March
3-Ââ4.30Â Round table with parliamentarians for young people
(IPU, UK NGO CSW Alliance)
Thursday 17th March
10-Ââ11.30Â BIC Women and Water (NAWO)
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)
Â Frida 18th March
10-11.30 BIC The real meaning of empowerment – how best to ensure implementation of the SDGs (Advance) (NAWO YWA)
12:30pm,Â Â CCUN Drew room Training in implementation: the role of civil society in making the SDGs Work (Pacific Rim Institure for Development Education) (NAWO YWA)
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.
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!
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