ACT Senior Australian Sue Salthouse will use award to continue her advocacy

Sue Salthouse
Sue Salthouse is the ACT’s Senior Australian of the Year. Photo: Supplied.

When Sue Salthouse was thrown from her horse a quarter-century ago and ended up in a wheelchair, it wasn’t the end, but the beginning of a life of fierce, determined and ongoing advocacy.

The former Canberra citizen of the year has been named our Senior Australian of the Year, following in the footsteps of last year’s winner Dr Sue Packer, who went on to receive the national award earlier this year.

That’s not to say Sue Salthouse was expecting the honour; she described her reaction to the announcement as one of “extreme surprise”.

“It’s a great thing to happen for women with disabilities in the ACT,” she told Region Media. “It’s really important because we’re a strong lot but these things like this highlight that there is a divide and some women across the spectrum are not getting a fair go at anything.”

At 70, Sue continues to work in the disability sector, where she runs a consultancy company specialising in disability rights advocacy.

Speaking at the launch of the YWCA’s Our Lives report on women in the ACT, Salthouse said that many of the report’s findings around inequality identified the same problems that had spurred her own decades of activism on disability and women’s issues.

“We can’t expect to achieve anything as a community when women’s haven’t got housing and financial security,” she said.

“We have demonstrated how difficult that is in the ACT on a low income. I’m constantly gobsmacked by what women are expected to do on Newstart. It is not anywhere near a decent daily income, but they are expected to go out and look for jobs as well, and then we inhumanely assess their ability to do that.”

Salthouse says that persistence drives her, and the need to keep fighting in case incremental gains are lost in the political and social scrum.

“You need a change in leadership for the good but sometimes we get a change that doesn’t help our country evolve,” she says.

“In the ACT we have many positives happening but we need to look at where the gaps are, the intersectional effects that stop people getting services and jobs.”

Salthouse intends to put her ACT Senior Australian of the Year award to good use. “I’m just thinking about what’s essential to all women here in the ACT which I can highlight during this year,” she says.

“One cause is around income. Welfare payments should eliminate any references to being a burden. We now hear from the very highest levels that people on welfare are a burden. But welfare is a right in this country.

“We need to look at universal basic incomes and a wellbeing index that is not profit-driven. I think we need to shift our whole focus in this society, whether it’s towards issues like climate change protests advocating for our future, to creating greater respect for this country and to how we treat each other in our daily lives.”

People with disabilities unsheltered in tornado alley

In the state with the highest number of disaster declarations, many Oklahomans with disabilities don’t have a storm shelter

Jackie Fortier / StateImpact Oklahoma

John High relies on his Christian faith to get him through Oklahoma’s severe weather. He installed this 14-foot high cross in front of his rental house.

John High knows that when he hears a tornado siren, he’s on his own. 

“I just pray. That’s all I can do,” High says while sitting in his motorized wheelchair at his home in Norman, Okla.

That’s because he doesn’t have a safe place to go. 

“One person told me ‘put on a football helmet and go in your kitchen.’ I got a window in every room of this house, so there’s really no place for me to go. That’s why I’m trying to get a shelter,” he said. 

High chose the house he has rented for more than a decade because of its proximity to a public school that was a designated public shelter. From his driveway, High can see the school just down the street. But most public shelters, including that one, were shut down a few years ago, leaving Oklahomans like High to fend for themselves.

“I lost my leg last Thanksgiving,” High said. “They expect people to ‘shelter in place’ but I don’t have anywhere safe to go.”

The gold standard for people who live in tornado-prone areas is a storm shelter. They range in price from a few thousand to tens of thousands of dollars, depending on the size and materials. The base model is basically a concrete box set into the ground, usually in a backyard. But it requires people to go down a set of steep stairs that is not wheelchair accessible. 

High receives assistance from both Medicaid and Medicare and says he simply can’t afford to pay for his own shelter. 

“What bill am I going to not pay to try to save up $3,800? I live day to day. Every month is really rough,” he said. 

After the closure of the public shelters, High thinks the federal or state government should help people with disabilities get their own storm shelters. 

“We’re [in] tornado alley. We’re known for it. Why aren’t they helping to protect us?” He said. “Instead it’s ‘well, just duck your head and go in your house.’” 

Climate change is making storms worse

Disasters are becoming more common in America. In the early and mid-20th century, fewer than 20 percent of U.S. counties experienced a disaster each year. Today, it’s about 50 percent. According to the 2018 National Climate Assessment, climate change is already driving more severe droughts, floods and wildfires in the U.S. And those disasters are expensive. The federal government spends billions of dollars annually helping communities rebuild and prevent future damage.

Data collected and analyzed by the Center for Public Integrity found that between 2009 and 2018, Oklahoma had the highest number of major disaster declarations in the country. That includes severe storms, fires, floods, ice storms and tornadoes. Many of those hazards, including storms, are expected to become worse and more frequent due to climate change. 

“If you’re able to install a safe room in your home, or on your property, we recommend that you do that, it’s the safest place that you can be during a storm,” said Keli Cain, a spokeswoman for the Oklahoma Department of Emergency Management. 

Despite experiencing some of the most severe weather events in the nation, Oklahoma has no state laws requiring storm shelters in homes, apartments or businesses. Instead, storm shelters are marketed as an amenity in some new housing developments. 

Jackie Fortier / StateImpact Oklahoma

The Oklahoma Office of Emergency Management does not track which homes have storm shelters, and officials say there is no program to help people with disabilities get access to shelters.

“Community shelters are funded on their own, either through bond issues or other funding methods, we don’t have a listing of the community shelters, they don’t have to register it through the state or anything, unless it’s funded by a [federal] grant program,” Cain said.

Oklahoma has one statewide storm shelter rebate program, funded by the Federal Emergency Management Agency. Cain says the grant provides about 50 households a year with up to $2,000 to help cover the cost. But it’s a random lottery system that doesn’t take socioeconomic status into account – and it’s restricted to homeowners. Renters, like John High, can’t even apply. 

“It’s FEMA’s rules,” Cain said. 

FEMA does restrict much of its disaster funding to homeowners, which has spurred litigation. Cain also said that for a person with a disability, there isn’t any help. 

“There is no specific program to help people with disabilities get a storm shelter,” Cain said. “Some people might have to leave their homes a couple of hours before the storm and go to a place that is safe.”

Americans with Disabilities Act turns 30

In July 1990 President George H.W. Bush signed the Americans with Disabilities Act into law. The ADA attempted to break down the barriers preventing millions of people from living healthy, productive lives by requiring basic steps to be taken to accommodate a range of health challenges, including impairments of sight, sound, and mobility. 

“Fifteen percent of the population is over the age of 65,” said Marcie Roth, CEO of the World Institute on Disability. “Within the next 40 years, this will grow to one in four people in the United States. In an emergency, you can count on the fact that people with disabilities will be affected.”

The ADA has been modified over the years to include emergency preparedness, but the focus was renewed after severe weather events like Superstorm Sandy and Hurricane Harvey.  

More recently, states were sent guidance on how to comply with the ADA by federal agencies, including the Department of Justice, but the implementation of those directives has been haphazard, and Roth says emergency preparedness has fallen by the wayside. She says it can be seen in the devastation caused by Hurricane Maria, a deadly Category 4 hurricane that ravaged Puerto Rico, the Virgin Islands and Dominica in 2017. 

“Interruption of medical care and disability services was the primary cause of almost 3,000 deaths following Hurricane Maria,” Roth said. “Emergency planning needs to be inclusive of the whole community and it needs to be equally accessible to everyone in the community.” 

Sara Pratt is a former official at the Department of Housing and Urban Development specializing in housing and disability rights and helped write the guidance sent to states. Now a civil rights lawyer in Washington D.C., Pratt thinks that Oklahoma may be violating the ADA.

“The idea that we don’t have to serve people with disabilities who are renters is not consistent with federal law,” Pratt said. 

Pratt says federal civil rights laws, including the Fair Housing Act and the ADA, require accommodations for people with disabilities in all disaster programs, including mitigation. 

“The programs that are being offered to assist people who are sheltering in their homes should be available to both homeowners and renters if they have disabilities and have disability-related needs,” she said. “There has to be an opportunity for a person with a disability to shelter.” 

More than 630,000 people in Oklahoma have a disability, but the state doesn’t know how many of them need storm shelters. Some local governments keep track of how many households already have one, but there is no shelter reporting requirement.

John High sits with his dog Angel in his house in Norman, Okla.

Some left seeking shelter

Sitting in his living room in Norman, John High says he’d like to see the public shelters reopened.

“Some people don’t even know the shelters are gone yet,” he said. “If you don’t need something, you don’t think about it until it’s necessary.” 

If the shelters don’t re-open, High says he’ll keep trying to get financial assistance to get an accessible storm shelter in his home. He plans to put it in the garage, so he can easily drive his wheelchair in, but so far he’s encountered a web of regulations. 

“Every time I hear the tornado siren, I fear, I fear for my life,” he said. “If a tornado comes through here, I’m going to be dead.”

This story is part of a series about the insufficient protections for vulnerable people as natural disasters worsen in a warming climate. StateImpact Oklahoma and four partners – the Atlanta Journal-Constitution, High Country News, Ohio Valley ReSource and the Center for Public Integrity – are contributing stories.

In Conversation with Disabled Students’ Liberation Officer: Ellen Blunsdon

Ellen Blunsdon

How are you feeling this morning?

Really good. I had a rough start to the week, but I am feeling rested. I have exciting things going on for today. I was in the first stages for a lot of projects for a while, but now we are at the point where these projects are confirmed and happening.

In your manifesto, you spoke about Staff Mental Health Accessibility Training. As the personal tutor system is currently under review, how has that affected your goals to provide mandatory training?

The end goal is for mental health and accessibility training to be compulsory, but because of the changes to the personal tutor system, consultation is currently my focus. With the transitory point that the University of Edinburgh is at with the personal tutor system, my focus is to make sure that disabled students are fully involved with the consultation. This is something I would love for my successor [to continue] down the line.

You also said that you wanted to take a radical, creative approach to ensure that the University of Edinburgh creates a safer and more accommodating campus. What did you have in mind?

I have been able to develop a good relationship with Kyle Clark-Hay, who is the Head of Estates Business Services. He has been incredibly supportive. I told him my vision for accessibility on campus and it is lovely to hear that he, with his position of power, has been so receptive to everything I was saying. My position [as Disabled Students’ Liberation Officer] has given me a platform to make actual changes, like the furniture consultation I have today for the new Health and Wellbeing Centre. Another incredible woman who was Disabled Students’ Liberation Officer about 6 years ago, and is still at the University of Edinburgh for her PhD, will be joining me, along with Oona Lilly Miller, VP Welfare, and Andrew Wilson, President. We also have disabled students involved to help make sure that the furniture is as accessible as it can be. It is little changes like that which matter. You are going to notice them when you go into a space.

Do you have an idea when the Health and Wellbeing Centre will open?

I know that the pharmacy is opening sooner, whereas the rest of the centre will open hopefully by the week of the Festival of Creative Learning in February.

On the academic side, your manifesto also said that you want to include disability in the curriculum. What kind of academic disciplines will you base this on?

Steph Vallancey, the VP for Education, had put me in touch with Allette Willis, who is the Programme Director for Health in Science and Society at the School of Social Sciences. Within 5 minutes of our meeting, we agreed to have a Disability Studies module in place at the School of Social Science by the 2020/2021 academic year. We are currently applying for the Principal’s Teaching Award scheme, which we will use to hire an intern who self-defines as disabled to shape the course in Semester 2. They will lead consultations with disabled students not only on how to make the course content interesting and reflective of understanding around disability and disability politics, but also how to make the teaching of the course accessible. We are trying to make as many innovations as we can within teaching and learning so that this can apply to the wider university, so that all courses can be as accessible as possible. This course will be an Honours-level course within the School of Health and Social Sciences, and it will be available for disabled people and their allies, regardless of whether they are in the School or not.

Speaking of community building, PrideSoc is organising an event called Tackling White Supremacy in LGBTQ+ Spaces. Do you have any thoughts on doing something similar?

The disabled student community at Edinburgh has potential, but it is difficult. When you compete with so many institutional boundaries and difficulties as a disabled student anyway, you feel like you have to tackle ableism within your course space, within your group of friends, within the university and within the city itself before you can then start to work on liberation. We only have so much energy to give out into this world. When you spend so much of your time applying for benefits and fighting for the resources that you need and dealing with ignorant comments from ableist people, it is extra energy. You do not always have the ability to get involved with disability activism, because not every disabled person will want to. It is difficult to build that kind of community when people are fighting. We [struggle individually] just being in university spaces that are not made for us, so when you tackle ableism yourself, it is hard to get that kind of community spirit because you are tired. It is difficult; we are combating our health and we are combating ableism.

I suppose the same would extend to disabled people who face multiple forms of oppression, in addition to ableism.

Exactly. It is compoundly more difficult as society is built for a very specific type of person and if you do not fit into that, then it is very hard. I think that the disabled community in Edinburgh has potential, but it needs to grow. There is a foundation of brilliant and engaged disabled students, but we need more.

Is that what your plans for community building will address?

Yes. My committee and I have decided to focus on enabling and supporting societies to run their own individual events. As the Disabled Students Liberation Officer, I have been contacting many societies and having good dialogues with them on Disability History Month. Firstly, it means that my energy is not completely [spent] as we have 15 to 20 events planned within the 30 days of Disability History Month in November. I am pleased with the positive reception, but I am very mindful that it has been from the able-bodied society leaders and people running these events, as I am trying to make sure that disabled voices are included in the conversation. However, it does mean that the work has lessened for disabled people. It means that when we see allyship from able-bodied people, it breaks down barriers so that disabled people can feel more comfortable getting involved with societies who prove themselves as allies. It has been an ongoing dialogue with myself and I have been trying to find a balance.

I am also doing a few speaking engagements. With regards to the model of tackling white supremacy in LGBT+ spaces, Hazel Sanderson and I are doing a similar event relating specifically to disability. We are also doing a panel on gender-based violence as gender-based violence is statistically twice as likely to affect disabled women. I am also doing a talk with Sexpression about sex and disability, slightly touching upon gender-based violence but mainly focusing on misconceptions around how disabled people are either infantilised or hypersexualised and how these tensions work. I know that the History Society and the Edinburgh Political Union are also doing lectures. The History Society lecture will be interdisciplinary while the Edinburgh Political Union said that they would have a lecture that is celebratory of the disabled community. It has been lovely to hear that not only do some of these societies have disabled members on their committees, but also that they were happy that I got in touch with them. Things like that are bringing disabled people into the liberation campaign as well as making able-bodied people not only aware of the struggles of being disabled, but also aware of the incredibly rich and complex history of our social group.

There is also another strand of community building that I have also considered. I want to start a campaign in Semester 2. It was originally going to be an anti-ableism campaign but it diverged from the original plans in my manifesto. Having spoken to my committee and fellow disabled students, it is now going to be a self-identifying campaign that will encourage people to self-identity as disabled, which I think is half the battle. The term ‘disabled’ has been stigmatised historically; it is not a positive term. Personally, when I started to identify as ‘disabled’, it gave me access to resources, to community and to the help that I needed. I started to become part of something and that gave me the emotional resources and mindset to make something of this. I felt so much comfort from the disabled community too. I want other people to self-identify as ‘disabled’ too, because there are so many people who are asking themselves if they even qualify as disabled if they do not have an official diagnosis or benefits or mobility aid or pills. I want to tell people, without forcing an identity onto them, that if they are having this type of conversation in their head, they probably are disabled. It is okay to identify as disabled; they will be welcomed into this community that will do great things for them. I think about the Twitter disabled community where I have learnt so much about my own internalised ableism and the beliefs that I held about myself because of my illness; they have helped me break them down, which has made me a happier person. I want people to be comfortable joining the disabled community. That is the focus of the campaign. For now, we are crossing the Ts and dotting the Is but I think that it may consist of personal videos of people explaining how self-identifying as disabled has helped them.

Will there be any open conversations on cultural barriers, especially concerning people who do not fit normative British or European white society, where coming out as disabled can be harmful?

For sure, I recognise that I am white and cis, and that I do not present as visibly queer; I have privilege which means that I cannot centre myself in that narrative. This is something for me to work on with other people so that I can help uplift their voices and their ideas. It is important to me to centre as many voices as I can from people who do not have the same experience as me, with all the privileges that I have.

I hope that your plans will help with the community building part of your manifesto goals.

Yes, all of this work I hope will get people involved to create a great community. For events, we have DisabiliTea every month. The first one we ran was really lovely. I have three amazing committee members; Mansi, Iona, and Diana are absolutely brilliant. They have been working so closely and so well with me so far. I appreciate all of their inputs and their experiences; it is so great. We are also currently working with the Equality and Diversity Officers and Disabled Students Officers at Edinburgh Napier University, Queen Margaret University, Edinburgh College and Heriot-Watt University to plan a mixer in November. We also planned an event with Kayleigh O’Neill, the Equality and Diversity Officer at Napier, called Know Your Rights for disabled students. We will have various charities, disability organisations and legal consultants for discussions about housing rights, employment rights, university rights and rights specific to disabled people. I think that it will be exciting and useful too. I am absolutely buzzing.

Such a Pretty Girl : A memoir by a disability rights activist by Nadina LaSpina

Such a Pretty Girl : A memoir by a disability rights activist by Nadina LaSpina

Such a Pretty Girl is Nadina LaSpina’s story—from her early years in her native Sicily, where still a baby she contracts polio, a fact that makes her the object of well-meaning pity and the target of messages of hopelessness; to her adolescence and youth in America, spent almost entirely in hospitals, where she is tortured in the quest for a cure and made to feel that her body no longer belongs to her; to her rebellion and her activism in the disability rights movement.

LaSpina’s personal growth parallels the movement’s political development—from coming together, organizing, and fighting against exclusion from public and social life, to the forging of a common identity, the blossoming of disability arts and culture, and the embracing of disability pride.

While unique, the author’s journey is also one with which many disabled people can identify. It is the journey to find one’s place in an ableist world—a world not made for disabled people, where disability is only seen in negative terms. La Spina refutes all stereotypical narratives of disability. Through the telling of her life’s story, without editorializing, she shows the harm that the overwhelming focus on pity and on a cure that remains elusive has done to disabled people. Her story exposes the disability prejudice ingrained in our sociopolitical system and denounces the oppressive standards of normalcy in a society that devalues those who are different and denies them basic rights.

Written as continuous narrative and in a subtle and intimate voice, Such a Pretty Girl is a memoir as captivating as a novel. It is one of the few disability memoirs to focus on activism, and one of the first by an immigrant.

“Our Lives Are Not Tragedies”: A Conversation on Disability Rights

Nadina LaSpina is a long-time disability rights activist and author of the memoir, Such a Pretty Girl: A Story of Struggle, Empowerment, and Disability Pride. LaSpina contracted polio as a baby, and as a child in her native Sicily, was the frequent target of pity by those who considered her doomed to an unhappy and lonely life.

Arriving in the U.S. at 13, she spent most of her adolescence in hospitals undergoing painful treatments in the hope of a cure that never materialized. Against the political tumult of the ‘60s, LaSpina rebelled both personally and politically. She refused to accept both the limitations placed on her by others and the dominant narrative surrounding disability. With her disabled comrades, she took to the streets to demand rights, services and respect. Together, they worked to build the disability rights movement into a global force.

Despite discrimination and stereotypes, LaSpina created a fulfilling life for herself as a successful professor and a tireless fighter. Still a committed activist, she also mentors young disabled women. In her memoir, she offers a much-needed insider’s account of a struggle that continues to this day. In this interview, LaSpina discusses how her childhood influenced her to write her book and how the fight for disability justice is ongoing.

Peter Handel: You were born in Sicily, where as a baby you contracted polio and never developed the ability to walk. The title of your book, Such a Pretty Girl, comes from what people often said to you there. Talk about what this meant.

Nadina LaSpina: “Such a pretty girl” was always followed by “What a shame!” And it wasn’t just the words, but the way they were said — with such sorrow, anguish. As a little girl, I couldn’t understand why people were so sad when they looked at me. I thought my being pretty made people sad. Usually, my mother would start crying. I hated to see her cry, knowing she cried because of me. I thought it would have been better if I were ugly.

What I remember most about my childhood is the pity, the oppressive religious atmosphere in the little town, my mother carrying me to the church and the convent across the street, where I went to school, and handing me over to the nuns, who carried me to the classroom — with that refrain always following me, Che peccato! (“What a shame!”)

The message I got so early in life was that I had no future to look forward to. One of the nuns told me straight out that I would never be happy. A girl’s future meant marriage and children. Beauty was a commodity that would land a girl a good husband. But that wasn’t true for me, since, being ciunca, crippled, I would never marry and have children.

After my father succeeded in bringing me and my mother (I’m an only child) to the U.S. so I could get better medical treatment, that refrain, “Such a pretty girl; what a shame,” and the idea that beauty was wasted on a disabled girl, followed me.

Your father seemed convinced that American doctors would cure you. Throughout your book, you talk about how problematic the focus on a “cure” is, but your father clearly loved you, and his quest for a cure was an expression of that. How did you navigate that emotionally? Why do you think the focus on curing is misguided?

Did my father, a very smart man, believe I could be cured of polio? Maybe his wish was so strong that it obscured his judgement, or maybe he wanted me to believe it, or wanted me to know that he would do everything possible (and even the impossible) for me. But what I heard and feared growing up was that, unless I could be cured, I had no future. What I understood was that I wasn’t good the way I was, I wasn’t the daughter my father wanted. In various hospitals, I was tortured in the quest for the elusive cure. Over and over again, I felt I failed my father by not being cured. But I knew my father loved me and I knew he was proud of me, so at a certain point, I let go of those feelings of failure.

What I developed instead was an intense aversion toward the word “cure.” As an adult, I would go on record telling The New York Times I was proud to be who I was and would not take that miracle pill, if it existed — a ridiculous notion, of course. I was really talking about identity. It had taken so much time, so much pain and struggle, to forge the identity of a proud disabled woman. I didn’t want to be non-disabled.

Focusing on cure gives false hope, when a certain condition is obviously permanent. It encourages people to put their lives on hold. We all need to live our lives in the moment; we need services and supports, access, equal opportunities now. Internalizing the commonly held opinion that, unless cure is possible, life will be sad and pitiful is extremely damaging.

I am not against research to treat and cure diseases. As a disability activist, however, I want to make sure taxpayers’ dollars don’t only go to medical research but go to make the world more hospitable and welcoming to those who will not be cured.

Throughout Such a Pretty Girl, you return to the theme of pity and how much you resented it. Why?

Pity is dehumanizing. It makes those of us who are the objects of pity feel we are “other,” we are “less than.” It makes the pity-givers feel happy they are not like us. That was the message of the telethons that I saw throughout my adolescence and young adulthood: give money to thank god that your children are not like these poor, unfortunate ones. The disability movement took a strong position against telethons. Disabled In Action held demonstrations in New York City against the United Cerebral Palsy telethon back in the ‘70s, and protests against the Jerry Lewis/Muscular Dystrophy Association telethon went on for many years throughout the country.

Pity objectifies us, erases our individuality. There is no empathy in pity. No identification with another person. If there were identification, all would have to acknowledge that there is no difference between disabled and non-disabled; we all have the same human body, made of flesh and blood, with bones that break and organs that fail. “Disability is just a normal part of the human experience, and a common characteristic of a normal lifespan,” as Americans with Disabilities Act (ADA) architect Justin Dart [Jr.] said. If they live long enough, all will experience disability. It’s in order not to face their own vulnerability and mortality that many would rather put up that wall, which is pity, and at times can also be contempt.

You spoke at the Women’s March in New York City in 2018 and revealed that you had been sexually assaulted in the hospital. You also discuss this in your book. It seems we rarely hear accounts of disabled women being targeted in this way. Why is that?

At the Women’s March, I started by thanking the #MeToo movement for giving women the courage to speak out. For the first time in history, women are being listened to and believed, rather than being blamed for what happened to them. I mentioned that the instance of sexual assault among disabled women is higher than it is against non-disabled women and even higher for women with intellectual disabilities.

We don’t hear about disabled women being sexually assaulted because they are less likely to report it. Many have intellectual disabilities, which may make it harder for them to speak out. But most of us — whatever the disability — have been conditioned to think of our bodies as defective, and have been made to feel we should be grateful for any sexual attention we may get. We are also frequently not believed when we come forward with accusations. Some of us may have become so accustomed to our bodies being handled, probed, cut up, that it may feel as if our bodies don’t belong to us but are common property. That’s how I felt, when I was molested and assaulted repeatedly in the hospital. I didn’t even recognize it as abuse.

In recounting my assault, I wrote:

A scalpel or a penis. What was the difference? I’d gotten used to strangers touching me, handling me, manipulating me, doctors cutting me up, over and over again, inflicting pain. Pain or pleasure. What was the difference? Did it matter what they did to me? After all, what claim could I have on this defective, damaged, disabled body? Wasn’t I supposed to be grateful to the doctors who were trying to fix it? Wasn’t I supposed to be grateful to any man for any attention I could get?

It was in the disability rights movement that you developed your voice and also met the love of your life. How did you get involved in activism?

I like to think that protesting against injustice is in my blood. I remember, when I was a child, my father going down to the town square to protest the discrimination against Sicilians in Italy. I also remember how excited I got, as a teenager in a convalescent home in New York, to hear about the civil rights movement and the March on Washington in 1963. I dreamed of being a freedom rider. As a young adult, I attended protests against the war in Vietnam and got involved in the fight for women’s rights, proudly calling myself a feminist. I was always ready to fight for “rights”; yet, I never thought that as a disabled person I had rights — until the disability rights movement.

The disability rights movement saved my life. My best friend, Audrey, who was also disabled, had listened and believed those messages of doom that came from all around us — our lives were seen as tragedies, our futures held no promise of happiness; because of our disabilities, we weren’t considered “real” women; we would never know love. Tragically, she committed suicide.

After her suicide, I fell into a deep depression. I thought she had done the right thing. Looking for a lifeline, I turned to some disabled friends. I found out that something new was happening — meetings and protests. The very idea of fighting back sounded both alien and exciting. I had read in the papers about a young woman, Judy Heumann, who sued the Board of Education in 1970 after being denied a license to teach because she used a wheelchair. She had founded the organization Disabled In Action. I met her, joined that organization, and discovered how empowering organizing and fighting back together as one could be.

Disabled In Action is still active, and I’m still part of it. Later, I joined ADAPT, a grassroots group that focuses on freeing people from institutions and securing home-based services. I’ve been arrested with ADAPT countless times.

I met the love of my life, Danny Robert, on January 27, 1992, at a demonstration at the Empire State Building. Title III of the ADA, calling for the accessibility of places of public accommodations, had gone into effect the day before, and Disabled In Action had decided to file the first lawsuit in the country under the ADA. The observation deck, then, was up a flight of stairs. The Empire State Building was made accessible, and Danny and I fell in love. For 27 years, we lived together a life full of passion and purpose. He passed away recently.

You’ve been arrested over 50 times for civil disobedience. What is it like to go through that process for you?

I want to make clear that civil disobedience is a last resort. We get arrested because other ways of bringing about needed change — e.g. letter-writing campaigns, meeting with legislators, using our judiciary system, engaging the media — have failed. At times, civil disobedience may be used to supplement and reinforce other methods of doing advocacy — when success starts to seem unlikely.

Getting arrested, for me, is the ultimate way of showing my commitment.

It isn’t pleasant. It could mean being kept in custody for many hours, or overnight, all belongings taken away until I’m released, a police woman following me to the bathroom to watch me pee…. But I’ve found it’s always empowering.

You write about coming to not only accept your body but to see it as beautiful. In a society awash in ableist beauty standards, this was a difficult task. How did you change your perception of your body?

Very slowly.

When I was in the hospital with Audrey, we would only look at our bodies in the bathroom mirror from the waist up, our legs covered by a sheet. We were happy when our legs were hidden by casts. We looked at the models in Seventeen magazine and cried, knowing there was no way we could ever be like them. For many years after that, I looked at myself in the mirror only from the waist up.

It was getting to know other disabled women that started the change in me. It was very gradual. I noticed some didn’t mind the way their bodies were different than non-disabled women’s bodies. A little at a time, I stopped comparing myself to models in magazines and started looking at my “disabled sisters,” and liked their different bodies, and liked seeing the similarities in the way my body and their bodies were different. I started noticing their beauty before I could see my own. I was 45 — and in love with my husband, Danny — when I finally looked at my naked body in the mirror and was able to see beauty there.

The flourishing of disability culture — our artists depicting disabled bodies and performers flaunting their differences on stage — made me appreciate more the beauty of my own body. When teaching disability studies, I tried to get my students to see “the frailty of atrophied limbs as interesting as the frailty of a Giacometti sculpture, the curvature of scoliosis as fluid as a Matisse cutout, the classic timelessness of the Venus de Milo in a body with missing limbs…”

Throughout your book, you talk about how you dislike being called “inspirational.” First, tell us why. Second, what would you say to someone who finds you inspirational because of how you confronted ableism both personally and in a larger political context?

When strangers who know nothing about me tell me I’m inspirational because they see me out in my wheelchair, what they’re saying is that, in my place, they would not want to be seen in public; they’re surprised I’m not hiding at home crying over my unfortunate state. People have actually said to me: “You’re so brave being out and about. I couldn’t do it. I’d probably want to kill myself.”

On the other hand, if they tell me I inspire them because I’ve confronted ableism, or because of my activism, or because I wrote a good book, I would simply say, “Thank you.”

CAS welcomes Scottish disability payment progress but ‘long delays’ still an issue

CAS welcomes Scottish disability payment progress but ‘long delays’ still an issue

The Scottish Government has made progress with its plans to reform disability payment processes to reduce anxiety and stress but more is still needed to be done, according to Citizens Advice Scotland (CAS).

A consultation found that new government proposals for a person-centred approach to assessing and obtaining disability payments were favoured over the current ‘one-size-fits-all’ system of the UK Government.

The Scottish Government said the new Scottish social security system measures will include:

  • Face-to-face pre-application support delivered across the country
  • A multi-channel approach for submitting applications, including telephone, paper-based and face-to-face
  • Clear eligibility criteria
  • Simplified application form
  • Enhanced role for carers in provision of evidence
  • Greater choice and control over the timing and locations of assessment, with home-based assessments provided where required
  • Profit-making companies will not be involved in carrying out assessments for disability payments

Social security secretary Shirley-Anne Somerville said: “I have heard from far too many ill and disabled people who currently know only of stigma, stress and anxiety when it comes to accessing welfare support and fear the ‘dreaded brown envelope’ from the Department for Work and Pensions.

“That is why I want a sea change in accessing disability payments. A new system designed from the ground up – together with users themselves – that puts people first.

“We are supporting people to access the financial support they are entitled to and actively seeking to move away from the stigma of benefits to recognise they are an investment in our people.

“That means a process that is clear and accessible from start to finish and ensures people understand how and when their application will be dealt with.

“It is part of our promise to the people of Scotland that our social security system is a public service and will treat everybody with fairness, dignity and respect.”

In response to the announcement, CAS social justice spokesperson Mhoraig Green said: “The Scottish Citizens Advice network helps hundreds of thousands of people every year, many of whom are disabled. Last year we helped disabled people claim £46 million in disability benefits. More than in 1 in 4 of all the people who come to us for help can’t work due to a disability or ill health, so we see first-hand the problems they encounter with the system and we are keen to see them get better support.

“Today’s announcement by the government includes a number of welcome measures which will change people’s experience of accessing social security for the better. Ensuring that evidence from peoples’ family and carers – together with further medical evidence that already exists – is taken into account when making decisions on their entitlement, will make the process more dignified for people and lead to more accurate decisions.

“We also welcome the longer time period being given to people who want to challenge an incorrect decision. This will allow more people to get independent advice and support with the process.”

She added: “However, we are disappointed that the new legal time limit for the agency to respond to challenges has been set at eight weeks. CAB clients have consistently told us that long delays have left them in limbo and without payment, which means many are pushed into debt and poverty.

“We will continue to work with the Scottish Government to help them achieve their aim of a more compassionate social security system. We all need to work towards a system that is rights-based and fully supports independent living for disabled people in Scotland. Today’s changes are a big step towards that, but more needs to be done.”

Mexico: Risks at Border for Those With Disabilities


Identify Asylum Seekers Facing Obstacles; Ensure Needed Services

(Ciudad Juárez) – Asylum seekers with disabilities waiting in Ciudad Juárez, Mexico for their United States asylum applications to be processed face obstacles to getting basic services, Human Rights Watch said today. Mexico’s government should identify and ensure services for people with disabilities and chronic health conditions.

Human Rights Watch research in Ciudad Juárez – a city across the border from El Paso, Texas – found that the Mexican government does not have a proper system in place there to screen and identify asylum seekers with disabilities and chronic health conditions. The authorities have not ensured physical accessibility in shelters, even new ones. Nor are they consistently providing information about and access to health care for asylum seekers with disabilities or chronic health conditions.

“People with disabilities face significant challenges when they are forced to stay for many months in Mexico waiting for asylum applications to be processed in the US,” said Carlos Ríos Espinosa, senior disability rights researcher at Human Rights Watch. “If the government doesn’t identify people with disabilities, it won’t be able to adequately ensure their access to basic services including health care, food, and shelter.”

An increasing number of asylum seekers, mostly from Central America, have been marooned in Mexico since January 2019, when the Trump administration introduced a policy it calls the Migrant Protection Protocols, also known as “Remain in Mexico.” This policy forces asylum seekers to wait in Mexico while their US immigration claims are pending. Although US policy states that “individuals from vulnerable populations may be excluded on a case-by-case basis” from being sent back to Mexico, Human Rights Watch has found that US border agents’ identification of people with disabilities and decisions to exclude them from being returned have been inconsistent.

As of October 4, almost 50,000 people were in Mexico awaiting US asylum claim hearings under the program. The US government’s practice of limiting the number of new asylum applications to 15 to 30 per day also means that asylum seekers typically wait 3 to 4 months in Mexican border cities to even begin applying for asylum in the US.

In Ciudad Juárez in August and September, Human Rights Watch interviewed 10 asylum seekers with disabilities or chronic health conditions, their families, and officials from the National Migration Institute and the Chihuahua State Council for Population, state agencies responsible for migrants. Human Rights Watch also visited Ciudad Juarez’s one state-run shelter for migrants and asylum seekers and three private shelters.

None of the four shelters were fully accessible for people with disabilities. The federally-run Leona Vicario National Integration Center, which opened in August with a capacity of 3,000 people, has no bathrooms accessible for people with physical disabilities. When it opened, there were no beds and people slept on mats on the floor, including people with disabilities. There is no accessible transportation to and from the shelter.

Government screening for health conditions and disabilities of asylum seekers who enter shelters is inconsistent. A government official and some asylum seekers said that a doctor conducts a basic medical exam of every person moving into a public shelter. At the Leona Vicario shelter, an official said that 86 percent of asylum seekers entering the shelter are registered as having health problems.

However, the shelter’s screening failed to identify some people with disabilities. One resident said that her one-year-old son had been diagnosed with microcephaly and asthma while in Honduras. When she arrived at the shelter in May, the authorities did not ask questions about her son’s health and did not register him as having a disability.

Four adults with disabilities or chronic health conditions in a private shelter run by a religious organization similarly said that no one had identified their disabilities and health conditions when they arrived.

Human Rights Watch research in December 2018 in Tijuana identified many of the same barriers for asylum seekers with disabilities.

Some asylum seekers end up in private shelters because there is insufficient state-run accommodation for all asylum seekers returned to Mexico. Regardless of where they find shelter, under international law, the Mexican government has an obligation to protect the rights of asylum seekers with disabilities. This includes screening for health conditions and disabilities and taking action to prevent them from developing further disabilities, Human Rights Watch said.

Federal and state officials acknowledged that the screening was not sufficient. The head of the National Migration Institute in Chihuahua said that his agency only detected “visible disabilities” and did not do additional screening. “We still do not have an agreed concept as to what we should understand by disability,” he said.

Four asylum seekers with disabilities interviewed also said that officials did not provide enough information or facilitate their access to health care. Asylum seekers in Mexico are eligible for state health insurance for low-income people, yet Human Rights Watch interviewed asylum seekers who did not have information about the plan.

A 55-year-old man from Cuba who is hard of hearing purchased a hearing aid with his own funds. He spent 200 pesos (US$10), the full amount his family sends to him each month to support himself. Human Rights Watch later learned that he could have received a hearing aid at no charge under the government’s health insurance. No officials had informed him of this benefit.

In another case, a Honduran woman who said she has high blood pressure reported that no officials had given her information about state health insurance. She has not received any treatment or medication for her high blood pressure since arriving in Mexico in May.

A man from Guatemala said that his son has a prosthetic eye which requires daily cleaning, yet officials did not share information with him about the medical insurance that would allow him to see a doctor. “We were in the dark, not knowing anything about health services,” he said. He secured a doctor’s appointment for his son nine months after arriving in Mexico after a nongovernmental organization informed him about the insurance.

Despite the fact that Mexican law establishes the right for asylum seekers who do not speak Spanish to have an interpreter without cost, the service is not always available. People with disabilities can face a disproportionate impact on their health if they don’t have timely access to an interpreter.

A 39-year-old man partially paralyzed in his right arm and leg from a stroke he experienced before fleeing violence in Cameroon said that during his three months in a private shelter in Ciudad Juárez, he had seen a doctor but had not been able to communicate effectively. “I have not been able to have an appropriate medical consultation because almost no one speaks English, and I cannot explain what happened to me,” he said. “I didn’t understand what the doctor was telling me.” Two days after the interview, he was hospitalized for a severe headache and high blood pressure.

Limited food options in shelters worsen some asylum seekers’ disabilities and health conditions. Food provided in three of the shelters visited by Human Rights Watch is primarily fatty meat and beans and is often spicy. An official responsible for providing food at the Leona Vicario shelter said that the shelter does not accommodate medical or other dietary needs.

A 29-year-old man from Uganda who had been in a private shelter for four months said he had an ulcer and back pain after alleged torture by the Ugandan military. “My condition here is very precarious,” he said. “I am very grateful to this shelter, but I am not well here. Every day they feed us the same food, and I need a fat-free diet because of my ulcer.”

Mexico’s Labor Ministry has a program to enable asylum seekers to find employment while their applications are being processed. But the Leona Vicario shelter manager said that this program has yet to ensure equal employment opportunities for people with disabilities.

Under the Convention on the Rights of Persons with Disabilities, ratified by Mexico in 2007, the government, including the National Migration Institute and the Labor Ministry, should identify and register asylum seekers with disabilities and ensure their equal access to shelter, employment, and health services through accessible information and communication.

“Mexico is obligated to protect everyone with disabilities and chronic health conditions, including those seeking asylum,” Ríos Espinosa said. “The government should strengthen procedures to identify and register their conditions and to ensure accessible information and other services.”