Dr. Molly Camp is an associate professor of psychiatry at University of Texas Southwestern Medical Center in Dallas. In a center news release, she said there are five domains to consider:
Personal needs and hygiene: Basic self-care activities, including bathing, dressing and toileting, must be met. A person’s ability to get in and out of tubs and showers and their risk of falling should be considered.
Home environment: Consider the ability to handle basic maintenance and repairs, as well as access to electricity and water, a sufficiently sanitary living environment and how to avoid safety hazards, such as structural deficiencies.
Necessary activities: Assess whether your loved one can complete complex, essential tasks such as transportation, shopping, meal preparation, cleaning and using technology.
Medical self-care: Your loved one should be able to manage their medications, care for minor wounds and self-monitor for illness.
Financial affairs: Evaluate whether the person has the ability to pay bills on time, track other finances, avoid exploitation, and enter into binding contracts when needed.
Of course, Camp noted, family members may be able to help manage finances and home visitation programs may be able to help with chores such as cleaning and cooking.
These new films show the fear and loss that come with dementia
BY Fran McInerney
Two new films explore the fear of forgetting, loss of control, and other complexities that accompany a dementia diagnosis. The Father and Supernova , both released this month, grapple with the challenges confronting people living with dementia and those who love them.
Dementia is the seventh leading cause of death worldwide , and the second leading cause of death in Australia . The media has an important role in shaping public understanding of poorly understood conditions such as dementia , and it is pleasing to see it considered thoughtfully in both films.
We watched these films through our lenses as a clinician and a neuroscientist. The different causes and conditions that make up the umbrella term of dementia mean the experiences of people living with it — and their loved ones — can differ widely. These films illustrate this well.
Marching through the brain
Because different parts of the brain control different functions, the type of dementia is defined by its pathology, origin in the brain and progression .
In Supernova, directed by British filmmaker Harry Macqueen and starring Colin Firth and Stanley Tucci, we see a fairly accurate representation of frontotemporal dementia. Specifically, this is the type where certain language skills are impaired, known as semantic dementia.
The Father, meanwhile, directed by French playwright Florian Zeller and based on his play of the same name, centres on a protagonist, Anthony (played by Anthony Hopkins), with Alzheimer’s disease, the most common cause of dementia.
Owing to the neurodegenerative nature of dementia, people with this diagnosis experience a progressive deterioration of memory, thinking and behaviour, and gradually lose the ability to perform daily tasks and other physical functions, ultimately leading to death.
‘I don’t need her or anyone else. I can manage very well on my own.’
Both films accurately reflect many of the key early features of these forms of dementia and provide insight into the varied presentations and issues associated with the conditions.
Whereas The Father focuses more heavily on the experience of the individual living with dementia, Supernova gives more attention to shared grief and loss.
Caring and sharing
In Supernova, Tusker (Tucci) and Sam (Firth) take a roadtrip through stunning northern England. We soon learn the journey is as much an adventure to visit Sam’s family, as it is an exploration of their own mortality.
‘You’re still the same person, Tusker,’ says Sam. ‘No I’m not, I just look like him,’ his partner responds.
Unlike many other illnesses, those living with dementia frequently show no outward physical signs of their condition until late in its course, and Tusker appears in good physical health.
We witness Sam’s panic when Tusker and their dog Ruby go missing. Impulsivity and spatial disorientation are common phenomena experienced in dementia. Later, Sam masks his distress (as carers often do), attributing his tears to cutting an onion while preparing dinner.
‘Can you tell? That it’s gotten worse?’
Dementia is a condition that affects the person progressively and globally; we initially only see subtle symptoms of Tusker’s language loss, for example, when he can’t find the word ‘triangle’. Later we note his loss of instrumental function: needing two hands to guide a glass to his mouth, negotiating which arm goes into which sleeve while dressing. Sam tenderly maintains Tusker’s dignity while helping him dress.
When Sam finds Tusker’s notebook, the writing in it has deteriorated across the pages to an indecipherable scrawl. The last pages are blank.
Tusker declares he is dying — dementia is a terminal illness — but how long he has left is unknown. The median time from dementia diagnosis to death is five years. For a previously high-achieving person like Tusker, the loss of his cognitive ability feels more profound to the viewer.
While The Father may appear to be an imagined horror story, it masterfully presents the disorientating and frightening reality for a person living with dementia.
Anthony is a powerful and compelling character who draws us into his internal chaos – unaware that he is losing his sense of self in place and time. We learn he has been an engineer and father of two daughters, and lives in a comfortable dwelling in a leafy London suburb. He is by turns irascible and charming. Like Tusker, he appears physically fit, well-groomed and fed.
The early narrative tension revolves around Anthony refusing home help. He denies verbally abusing a recent carer and accuses her of stealing his watch; when this is shown to be false he shows no insight or remorse. Those living with dementia may strive to make sense of things they cannot remember by imaginatively filling in the gaps .
People with dementia are altered by the disease, but it’s important to remember that who they are as a person still endures. IMDB
Seeing the world through Anthony’s eyes is a masterful plot device as we the viewers are not quite sure of what is ‘real’. At some early points we wonder if Anthony is being abused or gaslighted as we are drawn into his perceptions; later we learn that the lens through which we see Anthony’s world is distorted, but a terrifying reality to him.
Like all of us, Anthony is capable of harshness and tenderness, of charm and cruelty. Those experiencing dementia often have diminished control over their emotions and behaviours and this can be exacerbated by stress.
A small weakness of the film is that we gain no real sense of Anthony’s earlier life. Anthony’s temper may indeed be an enduring part of his personality, though it’s more likely a consequence of his serious disease. This is an important point for carers to understand. When his son-in-law challenges him to stop ‘getting on everyone’s tits’ we have some sympathy for Anthony, who we begin to realise is behaving fearfully rather than deliberately.
Eventually Anthony is reduced to sobs: ‘Lost all my leaves. Branches. Wind. Rain’. As he moves from the moderate to advanced stage of dementia , the need for tender and humane care is clear.
A key theme with many films exploring dementia, is the end — not just the end of the story, but the end of life.
In The Father we are drawn into Anthony’s agonising reality, the quiet chaos of tomorrow. In Supernova, we understand that Tusker chooses to write the end of his own story. Individuals living with dementia may be altered by the disease process, but it’s important to remember that who they are as a person endures.
The nihilistic vision of these films, while powerful and thought-provoking, is not the only possible construction of dementia. Though we must come to terms with the fact that dementia is a terminal disease, the end point does not negate the imperative to respond to the needs of the person; indeed, it highlights the need for empathy.
Kathy Brandt, a hospice industry leader who turned her own terminal cancer diagnosis into a public conversation about choices at the end of life, died Aug. 4. She was 54.
Brandt’s death was announced on social media by her wife and partner of 18 years, Kimberly Acquaviva, 47, a professor of nursing and author of a book about hospice care for LGBTQ patients and families.
“I wanted all of you to know that Kathy had a peaceful death and your love and support is what made that possible,” Acquaviva wrote in comments posted to Facebook. “Our family has felt your love and we can’t begin to tell you how much it’s meant to us.”
Brandt died at the Charlottesville, Va., home she shared with her wife, their 19-year-old son, Greyson Acquaviva, and their dogs, Dizzy and Mitzi. She was diagnosed in January with stage 3 ovarian clear cell carcinoma, a rare and aggressive cancer.
For the past several months, Brandt and Acquaviva chronicled the day-to-day drama of dying in a series of frank, intimate posts on Facebook and Twitter aimed at demystifying the process and empowering other patients.
After researching her disease, which has a median prognosis of less than 13 months and often fails to respond to chemotherapy, Brandt refused drug treatment, declining what she regarded as “futile” medicine. Instead, she chose aggressive palliative care to manage her symptoms, to the dismay of some friends and family — and even her oncologist.
“If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?” Brandt told Kaiser Health News in April.
The couple’s posts were followed by hundreds of well-wishers who donated more than $80,000 to help defray living expenses and medical costs. The essays and tweets were an unusually intimate window into the physical, emotional and psychological process of dying.
In April, Brandt described herself as a “dead woman walking” on the sidewalks of Washington, D.C., where they lived until June.
“It’s surreal trying to go about a ‘normal’ life when you know you aren’t going to be around in a few months,” she wrote.
During the last weeks of Brandt’s illness, Acquaviva tweeted about her partner’s bowels, posted photos of her sleeping and shared that Brandt was distressed about what would happen to her and to her family when she died. The frank posts prompted concern from people who asked whether Brandt had consented to have her death live-tweeted for the world. Acquaviva replied:
“My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”
The willingness of Brandt and Acquaviva to share an unflinching account of terminal cancer drew praise from fellow hospice and palliative care experts, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization and their longtime friend.
“As she did throughout her professional career, Kathy has continued to teach the field about compassionate care and patient self-determination,” he wrote in an email before her death.
Elena Prendergast, an assistant professor of nursing at Augusta University in Georgia, wrote that she was moved by their experience.
“I have gone through this with family and with patients, but somehow you both have found a way. With your humor and raw transparency, you both make me feel like I am learning about this process for the first time,” Prendergast tweeted last month.
Brandt remained passionate about encouraging patients to consider the full range of choices when confronting terminal illness.
“If you’re ever diagnosed with a disease that will ultimately kill you no matter what you do, think through what you want the rest of your life to look like,” she wrote in a July 11 email. “Then seek out care that will help you make that version a reality.”
Acquaviva said they had worried that Brandt would not receive the care they’d hoped for in a hospice setting — despite their long efforts to advocate for better conditions for LGBTQ people.
In a post on their gofundme page, Acquaviva urged: “Do whatever you can to ensure that ALL LGBTQ+ people — not just those who know who to call or what to ask for — have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence.”
Brandt asked that her obituary appear in The New York Times. It is scheduled to run next weekend, Acquaviva said, and it includes a final request that nods to the activism that characterized Brandt’s work on behalf of LGBTQ people and others who need end-of-life care.
“From the time that Kathy was diagnosed with clear cell ovarian cancer six months ago, she was clear with her family that the cause of death should be listed as the Trump Presidency in her obituary. In lieu of flowers, the family asks that donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”
A memorial for Brandt will be held at 2 p.m. Oct. 26 at Friends Meeting of Washington, 2111 Florida Ave. NW, Washington, D.C. 20008.
Elderly people with a poor sense of smell have a higher likelihood of dying in the 10 years after testing than those whose sniffers stay sharp.
In a new study, elderly people with a poor sense of smell had a 46% higher risk of death 10 years after olfactory abilities were tested, compared to those who passed the smell test. The study also reported that 28% of the increased risk of death could be attributed to Parkinson’s, dementia and unintentional weight loss, all of which predict death in their own right and can also affect a person’s sense of smell. [7 Ways the Mind and Body Change With Age]
But the remaining 72% of the risk linking poor sense of smell and death is unexplained and may be due to subtle health conditions that eventually worsen, the authors wrote in the study, published today (April 29) in the journal Annals of Internal Medicine.
The changes of age
According to the paper, about a quarter of older Americans experience a decline in sense of smell, but this is more likely to go unnoticed compared to loss of sight or hearing. Some studies have linked the decline in sense of smell to risk of death within five years of the decline’s onset, but that research didn’t control for demographics such as sex and race, or health characteristics that might explain the links between sensory loss and death.
n the new study, Michigan State University epidemiologist Honglei Chen and his colleagues used data from the Health ABC study, a long-running study of elderly individuals. (One of the co-authors of the new study, Dr. Jayant Pinto, has received money unrelated to the current study from pharmaceutical companies involved with respiratory allergies and nasal drug delivery.)
Between 1997 and 1998, scientists had recruited about 3,000 older adults, ages 70 to 79, living in Pittsburgh or Memphis, Tennessee for the Health ABC study. Of those individuals, nearly 2,300 completed a smell test at the beginning of the study. In this test, they were asked to identify 12 common smells, and they remained in the study until their deaths or until 2014, whichever came first.
During the total follow-up period of 13 years, about 1,200 study participants died. The researchers found that those with a poor score on the olfaction test had a 46% higher risk of dying by year 10 and a 30% higher risk of dying by year 13, compared with those who had a good score. (The stronger association at year 10 compared to year 13 was likely because the participants were already into their 70s and nearing the end of their life spans, the researchers wrote. By year 13, many were dying regardless of their sense of smell or health status early in the study.)
Sense of smell seemed to be a particularly powerful predictor of earlier death for those who were in good health, the researchers wrote. Among participants who said at the beginning of the study that their health was good, poor olfaction was linked to a 62% increase in the chance of dying by year 10 compared to good olfaction; it was linked to a 40% increase in the chance of dying by year 13.
What’s smell got to do with it?
It’s known that the neurological damage from Parkinson’s disease and dementia can affect a person’s sense of smell, so Chen and his colleagues investigated whether those conditions could explain the link between the nose and death. They also checked the role of weight loss, which could indicate malnutrition.
Even taking those conditions into account, a poor sense of smell explained 70% of the differences in timing of death. The association held across race and gender, which could make it a powerful tool for quantifying health, the researchers wrote.
“[P]oor olfaction among older adults with excellent to good health may be an early warning sign for insidious adverse health conditions that eventually lead to death,” the researchers wrote.
Business Insider explains one of the Republicans’ most egregious proposed changes in the tax code:
The Republican tax plan repeals an itemized deduction that applies to healthcare expenses. That’s key for families with high medical costs, like those dealing with chronic conditions that require medical devices and other expensive equipment. Right now, those expenses can be deducted from their taxes, but under the Republican tax plan, they wouldn’t be able to.
Under current law, individuals who spend over 10% of their income on medical expenses are allowed to deduct part of those costs from their taxes. The proposed new bill would remove that deduction. According to the Internal Revenue Service, for 2016 taxes, individuals were able to deduct in an itemized way “only the amount of your unreimbursed allowable medical and dental expenses that is more than 10 percent of your adjusted gross income [AGI].”
Who spends more than 10 percent of his or her AGI on medical expenses? Generally people at the end of life in nursing-care facilities, where many expenses are not covered by Medicaid or Medicare. CNBC reports:
“This would be a joke if the consequences weren’t so serious,” said Brad Woodhouse, campaign director of health-care advocacy group Protect Our Care, in a statement. “Republican leaders are determined to raise health-care costs for middle-class families who need it most — in this case people with high medical costs or those paying for long-term care.”
While it’s not a widely used tax deduction — about 5 percent of tax filers claim it — for the old and sick it can be significant.
It tends to be mostly … older people who do not have long-term care insurance, and end up in a nursing home,” said Richard Kaplan, a professor who specializes in tax policy and elder law at the University of Illinois College of Law.
The cost of living in a nursing home can easily run up to tens of thousands of dollars per year and wipe out the savings of elderly residents who are paying out of pocket. The deduction can be an important offset to taxes those Americans would owe on their retirement savings distributions.
“For people who are receiving long-term care and are paying for it themselves, this is going to be a huge deal,” said Kaplan.
Andy Slavitt, former head of the Centers for Medicare and Medicaid Services, tells me, “The medical deduction is one of the most popular and important tax credits, particularly for all of us as we age.” He adds, “It keeps many seniors and families out of bankruptcy when in need of end of life care. Ask anyone with chronically ill kids, parents, or spouses.” These are not only very sick, old people but very sick, old and non-rich people. (“AARP has calculated that about three-quarters of those who claim the medical expense deduction are 50 or older, and more than 70 percent have incomes $75,000 or below. Many of those expenses are for long-term care, which is typically not covered by health insurance. Long-term care can cost thousands or tens of thousands of dollars a year.”)
This move doesn’t recoup much revenue in the grand scheme of things. (“It will cost the government about $10 billion a year in lost tax revenues in 2018 and about $144 billion over the next 10 years.”) So why do it? Well, Republicans have given so many tax breaks to the rich and corporations that they are scrounging for ways to take benefits away from others.
Consider this: The giveaway to rich heirs by removing the estate tax and allowing heirs the “stepped-up basis” adjustment in assets comes to $300 billion. They are literally taking money from nursing home residents so that rich heirs won’t have to pay a dime of inheritance taxes on estates exceeding $11 million (for a couple).
Or think about elimination of the alternative minimum tax, something that costs President Trump and other very rich individuals millions or tens of millions. Repealing it would cost $695.5 billion. Literally, they are taking money from people in nursing homes so that Trump and people like him can pay less in taxes.
There’s only one word to describe this sort of trade-off: obscene.
[A] new generation of immune-boosting therapies has been hailed as nothing short of revolutionary, shrinking tumors and extending lives. When late-stage cancer patients run out of other options, some doctors are increasingly nudging them to give immunotherapy a try.
But that advice is now coming with unintended consequences. Doctors who counsel immunotherapy, experts say, are postponing conversations about palliative care and end-of-life wishes with their patients — sometimes, until it’s too late.
“In the oncology community, there’s this concept of ‘no one should die without a dose of immunotherapy,’” said Dr. Eric Roeland, an oncologist and palliative care specialist at University of California, San Diego. “And it’s almost in lieu of having discussions about advance-care planning, so they’re kicking the can down the street.”
Palliative care and oncology teams have long been wary of each another. For many oncologists, palliative care teams are the specialists to call in only when curative treatments have been exhausted. For many palliative care specialists, oncologists are the doctors who prescribe treatments without regard to quality-of-life considerations.
But the new collision between immunotherapy and palliative care experts comes at an inopportune moment for health care providers, who have in recent years promoted palliative care as a way to increase patient satisfaction while reducing costs associated with hospitalizations and emergency room visits.
Dr. Cardinale Smith, an oncologist and palliative care specialist at Mount Sinai Hospital in New York, said she has seen a handful of patients who tried immunotherapy treatments after failing chemotherapy, and who were later admitted to the hospital in poor condition. Almost all of them died there, without having been asked about where, and under what conditions, they might prefer to die.
“These conversations are not occurring because of the hope that this will be the miracle treatment,” Smith said. “Unfortunately, on the part of the oncologist, treatments like immunotherapy have become our new Hail Mary.”
Immunotherapies work for only around 15 to 20 percent of cancer patients who receive them.
They have been approved by the Food and Drug Administration for Hodgkin lymphoma and certain cancers of the lung, skin, blood, kidney, bladder, and head and neck — but not for common cancers like prostates and most cancers of the colon and breast. A new type of immunotherapy, CAR-T, was approved earlier this week for leukemia.
But even for those cancers, oncologists and patients sometimes refuse to acknowledge clear signs that immunotherapies are failing, said Dr. Sandip Patel, a cancer specialist and immunotherapy researcher at the University of California, San Diego.
Patel said he now engages home-based palliative care specialists, who can provide supportive care while a patient’s health is relatively stable. “Then, at least when they transition to hospice, it’s not as much of a free fall out of the traditional health system, and if they’re one of the patients who respond to the therapy, great.”
He lamented the fact that patients who fail immunotherapy treatments spend more time in hospitals than with their families at home. “The flip side is, if I had a cancer with a 15 percent response rate, and if the benefit might be longer-term, I’d try it,” he said. “Who wouldn’t buy a ticket to a lottery of that importance?”
But not all patients have a clear idea of what that lottery ticket might cost them. Carrie Clemons’s father, Billy Clemons, who is 68 and is a former Texas state representative, last year stopped responding to chemotherapy for renal cell cancer that first struck him in 2002. His doctors recommended the immunotherapy Opdivo, which had recently been approved for his cancer.
At the time, he was symptom-free from his cancer, though scans showed it had spread to his lungs and some lymph nodes.
Two infusions of the drug, Clemons said, were followed by “eight months of hell,” during which her father became incontinent and had to use a wheelchair, lost his eyesight and most of his hearing and speech, and endured multiple weeks of intubation and care in the ICU. When his heart stopped beating, he needed to be resuscitated.
While immunotherapies trigger debilitating side effects much less frequently than chemotherapy, they can spur potentially life-threatening conditions, depending on the cancer type and the treatment approach. Fewer than 5 percent of patients overall face serious side effects, for instance, but more than one-third of melanoma patients who receive a combination of immunotherapy drugs can experience such conditions. The upside: Half of those melanoma patients will see their cancer shrink for at least two years.
Clemons’s doctors at Houston’s MD Anderson attributed the reaction to a runaway immune system that essentially attacked his central nervous system. To reverse it, he needed weeks of therapy to replace his plasma with that of donors, to clear away his blood’s overly active antibodies.
He slowly improved, though, to the point where only some slight vision impairment remains, and doctors recently declared his cancer in remission.
Although the family is thrilled at the outcome, Clemons said, they had little idea when they began that such side effects were possible, and doctors never engaged the palliative care team to either discuss side effects or help manage them.
She wouldn’t have known to ask about such care. “I always just equated palliative care with hospice,” she said.
Hospitals overall have made some headway in integrating oncology and palliative care specialists, with more oncologists referring patients to palliative specialists to help them ease side effects of treatments and achieve quality-of-life goals.But Roeland, the doctor at the University of California, and others say the integration is less smooth when it comes to cutting-edge cancer treatments.
Palliative care teams have not been able to keep abreast of the breakneck pace of cancer treatments, so they may not be offering up-to-date counsel to patients who ask about possibly life-changing therapies.
Meanwhile, most of the growth in palliative care medicine has happened among clinicians who work in hospitals, where they generally see only those who have done poorly on immunotherapies, for instance.
“They’re not seeing the super-responders,” Roeland said. “So their first reaction usually is, ‘Why would you do that?’”
Roeland understands more than most the seductive qualities of an eleventh-hour immunotherapy gambit. He had given up hope of curing Bernard “Biff” Flanagan, 78, of his esophageal cancer in late 2015, and referred Flanagan to hospice care to help him manage his extreme weight loss, fatigue, and the emotional distress he felt from not being able to swallow.
But Flanagan, who speaks with the gruff, seen-it-all humor one might expect from a career FBI agent in LA, wanted to keep seeking a cure.
Roeland said he knew that many hundreds of clinical trials were testing the therapies on other cancers, so he did some digging. A paper from a recent cancer conference showed that some people with squamous cell esophageal cancer responded to immunotherapy. He could arrange to get the drug through the Bristol Myers Squibb, for free.
He presented the idea to Flanagan and his wife, Patricia, with the caveats that it might not work, and could come with possibly significant side effects.
Flanagan jumped at the chance. Patricia, a former professional photographer, was less enthused.
“I ran into her later in the coffee shop,” Roeland said. “She looked at me like. ‘What the hell are we doing here? He doesn’t have a good quality of life.’ I’m feeling guilty now.”
Roughly six weeks into the treatment, Flanagan’s energy was returning, and he found himself at the fridge. “I grabbed a glass of OJ, knocked it down, swallowed it no problem,” he said. “And it was like a miracle. I had another one.”
Now Flanagan has no symptoms, and he experienced only the briefest side effect: a skin rash that abated with ointment. Patricia recently helped him dispose of the morphine and other medications the hospice team had given them.
“If he’d died in the hospital, I would’ve felt terrible,” she said. “If I were in his place at that point, I’d have tried to arrange to die at home at my own choosing, but Biff just didn’t have as strong feelings about that as I had.
“I had little hope that he was going to recover, but it’s just been amazing. He really is living the life he’s always lived.”
Roeland said that for the experience “is so immensely rewarding that it drives an oncology practice. It can be 1 in 100 that happens like that, and you say, well, is it worth it?”
Like many young women, Emily Yates has tattoos, tinted hair, a love of fashion and a great sex life. She also happens to have cerebral palsy
By Emily Yates
I think it is fair to say that the Paralympics have changed perceptions for the better in linking disability and sport. We have become used to watching elite athletes win medals and represent their countries in front of large crowds, and they just happen to use wheelchairs or prosthetic limbs, or be of short stature, or have hearing and visual impairments.
But what happens when we change “sport” to “sex”? Does awareness and education exist in the same way?
Inclusive and accessible sex education certainly did not exist when I was at school – apart from, perhaps, putting a condom on a banana. We are aware that disabled women, in particular, are almost three times as likely to be sexually abused than their non-disabled peers and yet those of us with disabilities are still entering lessons and workshops that are not designed for us. There are few, if any, subtitled and audio-described videos, information is usually not easy to read or understand, and the bodies in these videos and photos rarely, if ever, reflect disability of any kind, further alienating those of us classed as less than normal, and often less than attractive.
My twin sister and I were born 10 weeks early with cerebral palsy and I became a wheelchair-user at the age of nine after corrective surgery on my legs.
Like many of my friends, I have been in situations where I felt vulnerable sexually, but one in particular was exacerbated by my disability. I am well able to stand up for myself, but I was in a taxi, with my wheelchair in the boot, and the taxi driver was totally inappropriate and very suggestive. Knowing that my disability hindered me in dealing with his approaches was horrible. I decided to keep talking politely to him in the hope that I could distract him through small talk, which I did, until he dropped me off.
I reported him, but it highlighted the difficult situations you can find yourself in sexually if you have a disability.
Children and teenagers are constantly told to respect themselves and others, but if you are disabled, it is likely that many of the adults in your life might never consider you as a sexual being, meaning that the usual safety advice and strategies are rarely discussed. You are doubly vulnerable if you can’t physically remove yourself easily from an awkward situation.
I have been fortunate enough to have great sex and talk about it, but it wasn’t easy for me. Before losing my virginity pretty late, when I was 19, my main concern wasn’t the act itself, but the positions that would be possible without causing a great amount of pain. I also worried that the passion would totally disappear after a bit of inevitable planning.
There were very few helpful answers on the internet, so that left one avenue: laughing and crying with my auntie and sister on a Sunday afternoon as we went through possible positions together … no doubt a story that will surface should I ever get married.
Although it was a giggle and it helped a lot – thanks, guys – it is also tragic that I had to get myself in such a panic over something that is supposed to be sexy and fun because I simply didn’t know where, or who else, to turn to.
Most people, disabled or not, go through a transition stage in which they are suddenly aware of others’ attraction to them and their desire to be attractive in return. For me, this happened quite late and I tended to leave getting the guys to my sister, who was, I have to say, very successful at it (she is about to get married). Although I’m over the moon for her now, I can see that I was pretty jealous of her victories with boys at the time.
As I have got older, learned that necessary patience and had great sexual experiences, I have also grown in confidence, although I still have some way to go until I am as self-assured as I would like to be when it comes to romance and intimacy.
Some people still think that disability isn’t sexy or, worse, having sex with someone who has a disability is seen as wrong. There is also still a sense that if you have a disability, you are ill or frail, neither of which fit into the traditional idea of what we consider sexually attractive in our society.
But change is coming and I am proud to be a part of that.
My sexual experiences have resulted in an awareness of myself as a woman that no one can take away – and that is a great place to be, disability or not. But it is important to remember that those experiences don’t come easily for young disabled people. For so many years, I have had more important things than being sexy to concentrate on. Other teenagers tend not to have to think twice about whether they are able to go on school trips, or prove they can go to university – physically travel there, rather than just reach the required academic standards, find accessible accommodation and work out travel arrangements.
My confidence has been boosted enormously by taking control of my life, and this has helped me in my job as a travel writer. When I volunteered at London 2012, I sat next to Sebastian Coe at a press conference and asked him for 15 minutes of his time and all the contacts he could give me. He, in turn, mentioned me in his speech at the closing ceremony for saying that the Paralympic Games had “lifted the cloud of limitation” for those with disabilities.
I went on to do a two-year consultancy with MetroRio on accessible underground travel and wrote an accessible-travel guide to Rio de Janeiro with Lonely Planet in preparation for the 2016 Olympic and Paralympic Games. I am the founder and one of the directors of My Purple Compass, a company that encourages people with disabilities to travel far and wide, journeying out of their comfort zones.
I also work with Enhance the UK, which, through the Love Lounge, is providing the sort of information I would have loved as a teenager. Change is slow, but it is happening, and we are able to help others to discuss important issues, such as the positions and pain worry I had years ago, through to whether disclosing a disability on an online dating site is a good idea.
Sex education for disabled children and teenagers must be taught in schools as a matter of course, and parents and other family members can play a big part by making it as important for disabled people as for everyone else. More sexually active disabled people in popular culture would also help to change all those perceptions of disabled people, and illustrate that we enjoy sex as much as anyone.
Although being a disabled woman is currently what my work is based on, I’m much more than a girl in a wheelchair. I have the same tatts, tinted hair and love of fashion as many women my age, and I hope that others see that as well as the wheelchair. I am learning that disability and sex are not mutually exclusive and I love the journey that comes with it.