Tag: Sex and Intimacy

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Hiding who I am: The reality of end of life care for LGBT people

Everyone should have the right to high-quality palliative care when they have a terminal illness, regardless of their condition, where they live, or their personal circumstances. It’s commonly assumed that everyone with a terminal illness gets the care they need, however one in four people who need palliative care in Northern Ireland are not currently accessing it.

 

by Craig Harrison

Raising awareness of the issues

The problem can be particularly acute within the LGBT community, and last year, research commissioned by Marie Curie found that concerns around discrimination, stigma and invisibility can often cause LGBT people to access services late or not at all.

To explore these crucial issues, Marie Curie Northern Ireland held a policy seminar to raise awareness of the barriers faced by our LGBT community in accessing end of life care and what can be done to address them.

Held in Stormont, the home of the Northern Ireland Assembly, the event brought together a wide range of stakeholder groups, departmental officials, MLAs and health and social care representatives.

oan McEwan, Head of Policy and Public Affairs at Marie Curie Northern Ireland spoke about the need for LGBT people to be able to access care, free from discrimination.

Championing compassion and understanding

Guests heard from Joan McEwan, Head of Policy and Public Affairs at Marie Curie Northern Ireland, as well as John O’Doherty, Director of local LGBT organisation the Rainbow Project  . John discussed the needs of older LGBT people in health and social care, and said:

“Accessing care as an older person is something many of us do not consider we will need until it is upon us – particularly end of life care. This is a difficult time for everyone, but for many LGBT people, fears of homophobia and invisibility exacerbate an already distressing and difficult time.

“Ensuring services are accessible, safe and considerate of the specific needs of LGBT people means understanding their experiences, particularly the impact of homophobia, transphobia and marginalisation throughout their life.

“Marie Curie’s work in end of life care for LGBT people is imperative to ensuring that everyone living with terminal illness in our society can access care and support that is underpinned by compassion and understanding.”

Dr Richard O’Leary spoke about the experiences of he and his partner, Mervyn, when Mervyn was in hospital toward the end of his life.

“The assumption that we were not a couple”

Guests also heard from Dr Richard O’Leary, a retired university lecturer who was a full-time carer for his late partner Mervyn. Richard said:

“When we came to access end of life care as a same sex couple we were fearful of what we might encounter from service providers.

“My civil partner Mervyn was admitted to hospital many times and the assumption that we were not a couple was made at least once during every hospital stay. In the public ward in hospitals I was wary of showing affection to Mervyn because it was unclear whether the hospitals had a protocol to protect us if anyone objected to us being affectionate.

“In hospitals and hospices much of the emotional care of the dying is offloaded to the chaplaincy service. This can be problematic – with one chaplain telling me that they were ‘struggling with the issue’ of same sex relationships.

“Mervyn and I enjoyed 25 years of a committed, loving relationship until he died on 2 August 2013. After Mervyn’s death, there were people in my family and in my faith community who explicitly withheld from me the expression of condolence.

“Service providers should be aware of the disenfranchised grief and reduced social support that may be experienced by LGBT persons during bereavement. I’d like to thank Marie Curie for their pioneering research and leadership in the area of end of life care for LGBT people.”

Making good practice more widespread

The presentations made clear that there are pockets of good practice in end of life care provision for the LGBT community. Service providers and HSC professionals must now work together to take these examples and make them universal – to ensure LGBT people receive high-quality, person-centred care that acknowledges and supports them during terminal illness.

Dr Richard O’Leary, Melanie Legg, Joan McEwan, Mark H Durkan and John O’Doherty at the event on 7 September 2017.

Read our report,  ‘Hiding who I am: end of life care for LGBT people’  , which explores why LBGT people experience significant barriers to getting palliative care when they need it.

Complete Article HERE!

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Sexuality, Intimacy and Palliative Care

A ground breaking program at Neringah Hospital (Wahroonga, NSW) is meeting the sexual and intimacy needs of people coming to the end of their life.

 

[W]hile research has shown that patients in palliative care have unmet sexuality and intimacy needs, they are usually not addressed. At Neringah, a 19 bed palliative care hospital, patients and staff are encouraged to normalise topics around sex and sexual desire.

“Sexuality and dying are considered taboo subjects, and most people feel that people in this stage of their lives are too ill to think about sex,” according to Brigitte Karle, Clinical Nurse Educator with HammondCare.

“But our palliative care staff – and our patients – recognise that sexuality is part of the holistic care of patients, and this has resulted in the “Let’s Talk About It” program.

“We need to make it easier for patients, their partners and staff to feel that they can have the conversation without being uncomfortable,” she said.

To facilitate the process patients are advised that they can arrange for a particular sign to be affixed to their door that forbids entry for a certain period.

“Through our research we have identified that patients would like staff to initiate the conversation, and we have implemented a system where staff feel confident to recognise cues to take the appropriate action to provide “Private Couple Time”.

“We also identified a need for staff to have additional training and education so they feel more comfortable about the issue.”

At Neringah Hospital, patients can arrange for a particular sign to be affixed to their door that forbids entry for a certain period.

“Regardless of the setting it is important for all hospitals and staff working in sub-acute care to recognise that people who are in the last stage of their life may have sexual needs,” Ms Karle said. 

Ms Karle said Neringah’s unique set up, which included private rooms, allowed patients to have intimate private relationships with their partners that might not be available in other hospitals.

Neringah Hospital Inpatient unit provides short term acute care to patients managing a life limiting illness and is not a long stay facility. The unit provides palliative care for:

  • short term admission to alleviate symptoms and the distress they cause
  • holistic care to meet the special needs of patients in the final stages of their illness

The hospital has 13 single beds and three double rooms. The study, Let’s Talk About It, was conducted over an eight month period and involved training for staff and designing ways that patients and their partners could have private time.

Brigitte Karle, Clinical Nurse Educator with HammondCare

Complete Article HERE!

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Is it Possible to Die of a Broken Heart?

After 55 years of being by his side every day, being apart was more than she could handle when he became ill.

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[S]omehow she knew it would be the last time she saw him. They had lived together in their house for 37 years until it became necessary to move to an Assisted Living Facility. Not their choice at all, but they could no longer maintain their home, their finances, their nutritional needs and more.

They met in their mid-twenties on a blind date at the beach. They sat on a blanket smoking cigarettes; she, shy and unsure of herself, was immediately intrigued and attracted to the young man a year and a half her junior. She must have had an open heart; he had just had all his teeth pulled. She didn’t care; she saw a kind and gentle soul. Two months later, he had a new set of teeth and a bride, marrying in his parent’s backyard.Within five years they had two children, a boy, and a girl, just like she wanted. She loved being a mom and a wife. They moved as a family across the country twice, settling in Central Florida and buying a home after many years of renting.

◊♦◊

My parents rarely fought. They bickered and disagreed, but I don’t remember any ugly scenes. I just remember love. Whenever they did get on each other’s nerves, it didn’t last long. Especially if  I put their favorite song, The Nearness of You, on the record player. It was impossible for them not to stop fussing and begin to laugh and hug and kiss each other when they heard it.

They loved each other’s company. It was rare they were apart if they weren’t working. They just loved to be together. A lot of husbands don’t enjoy going to the grocery store with their wives. Dad always did. Probably to keep her from spending too much, but regardless, they did it together. I have many memories of them walking through grocery stores and malls holding hands. My parents didn’t have any issues with public displays of affection.

I have fond memories of them bowling and square dancing together too. They got up together every morning, and went to bed together at the same time every night, after the evening news. When they both retired, they drove around the country, stopping to visit friends and family. Just the two of them. Inseparable.

As with many people, aging was not kind to my mom and dad. He went through a bout of Leukemia and shingles. She – a heart attack, congestive heart failure, kidney issues and breathing trouble. Her heart surgery went fine, but she contracted MRSA in the hospital and required more intensive surgery that she nearly didn’t survive.

But she pulled through. She was a fighter and she needed my father. And he needed her too. He sat by her side every day in ICU, then at the long-term hospitals and rehab facilities where she was moved for recovery.

Finally, she came home and they enjoyed a few quieter years together with me checking on them daily.

But there soon came a time when they needed more. Much more.

Dad was showing signs of Dementia. Medicine and meals were missed. Food was rotting in their fridge. Bills weren’t getting paid. Little by little, their well-being was eroding and I was struggling to help them maintain.

It took a crisis of their phones being shut off and nearly their electricity too, to really understand their situation, and while it was one of the toughest decisions I ever made, I moved them to an ALF and sold their home.

For a while, Dad did well. Even though he had early dementia, he still was able to drive and he became involved in activities. Mom was less happy, but she was safe, her medications were managed for her and I was finally able to sleep.

And for a couple years, life was status quo. Until it wasn’t.

Little by little, Dad’s mind began to slip and then continued to slip away. It started with him sleeping more than usual which I attributed to depression; sleeping is a great escape when you feel you are “having your life taken away from you.”

And the slide continued. His confusion increased as his cognitive mind decreased. One of the hardest days was having to take his car away. His self-care began to erode. There were days he didn’t get dressed or shave. He wasn’t eating very much. He slept much more of each day than he was awake.

Mom was frightened. She felt isolated and alone. I could tell she was grieving as she watched the man she loved so deeply slowly disappear. I felt the grief as well. The meds the neurologist prescribed we had hoped would slow down what was happening to his mind. didn’t seem to be slowing down anything at all.

Then the phone calls from the ALF staff began.

“We are having a problem with your father. He is wandering into other resident’s rooms.”

We all knew it wasn’t intentional. He just had no idea where his apartment was, after five years of living there. And with each passing day, it became obvious he needed more help with activities of daily living as he could no longer care for himself and Mom was unable to care for him.

This was where the heartbreak began. Dad had always provided for the family and Mom and always been, well, Mom, the nurturing rock as many mothers are. When she became sick, he took over, administering her medications including insulin four times a day. Now neither of them could help each other and he was becoming a shell of the man he used to be.

A painful decision was made to move him to the Alzheimer’s unit. My parents had never been separated before. Mom moved to a smaller apartment a short time after. She became increasingly depressed as his mind continued to drift.

I spent hours trying to reach him. Singing to him. I have read many studies that music is the last thread some Alzheimer’s patients hang onto and there were times he would nod and hum along.

Mom hated going to see him in the Alzheimer’s unit. It bothered her immensely. My stress increased as well trying to help both of them. She called me often, leaving voice mails if I wasn’t available, always asking about my dad. How was he? She was so worried about him. Her grief was palpable.

About six weeks after his move to the unit, Mom asked to go see him. Her color was not good. We entered the unit and found Dad sitting outside his room in his chair – the one I brought down so he would have something familiar. He seemed lost in his own world.

I paused as I heard the music on the sound system. The Nearness of  You was playing. What were the odds that their song was filling the room. Divine intervention perhaps?

“Dad,” I whispered in his ear. “Listen. Do you hear the music? It’s your song. And look, it’s your bride.”

He nodded slightly and looked at Mom. I began to sing in his ear the words and he continued to nod. I glanced at Mom; tears were running down her cheeks. Somehow I helped him stand up, and she did too and they gave each other a hug. I asked him if there was anything he wanted to say to her and he croaked out “I love you,” in a raspy voice, then sat down and closed his eyes.

Mom was shaking by now and asked me to take her back to the main area, out of the Alzheimer’s unit. It was just too painful for her.

The next day, the call from the ALF was not about him, but her. She was being rushed to the hospital: her broken heart had stopped beating.

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Complete Article HERE!

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When a Partner Dies, Grieving the Loss of Sex

By JANE E. BRODY

[A]fter Alice Radosh’s husband of 40 years died in 2013, she received, in addition to the usual condolences, countless offers of help with matters like finances, her car and household repairs. But no one, not even close friends or grief counselors, dared to discuss a nagging need that plagues many older women and men who outlive their sexual partners.

Dr. Radosh, 75 and a neuropsychologist by training, calls it “sexual bereavement,” which she defines as grief associated with losing sexual intimacy with a long-term partner. The result, she and her co-author Linda Simkin wrote in a recently published report, is “disenfranchised grief, a grief that is not openly acknowledged, socially sanctioned and publicly shared.”

“It’s a grief that no one talks about,” Dr. Radosh, a resident of Lake Hill, N.Y., said in an interview. “But if you can’t get past it, it can have negative effects on your physical and emotional health, and you won’t be prepared for the next relationship,” should an opportunity for one come along.

Yes, dear readers of all ages and the children of aging parents, many people in their golden years still have sexual urges and desires for intimacy that go unfulfilled when a partner becomes seriously ill or dies.

“Studies have shown that people are still having and enjoying sex in their 60s, 70s and 80s,” Dr. Radosh said. “They consider their sexual relationship to be an extremely important part of their lives. But when one partner dies, it’s over.”

In a study of a representative national sample of 3,005 older American adults, Dr. Stacy Tessler Lindau and co-authors found that 73 percent of those ages 57 to 64, 53 percent of those 65 to 74 and 26 percent of those 75 to 85 were still sexually active.

Yet a report published by the United Kingdom’s Department of Health in 2013, the National Service Framework for Older People, “makes no mention of the problems related to sexual issues older people may face,” Dr. Radosh and Ms. Simkin wrote in the journal Reproductive Health Matters. “Researchers have even suggested that some health care professionals might share the prejudice that sex in older people is ‘disgusting’ or ‘simply funny’ and therefore avoid discussing sexuality with their older patients.”

Dr. Radosh and Ms. Simkin undertook “an exploratory survey of currently married women” that they hope will stimulate further study of sexual bereavement and, more important, reduce the reluctance of both lay people and health professionals to speak openly about this emotionally and physically challenging source of grief.

As one therapist who read their journal article wrote, “Two of my clients have been recently widowed and felt that they were very unusual in ‘missing sex at my age.’ I will use your article as a reference for these women.”

Another wrote: “It got me thinking of ALL the sexual bereavement there is, through being single, through divorce, through disinterest and through what I am experiencing, through prostatectomy. It is not talked about.”

Prior research has “documented that physicians/counselors are generally uncomfortable discussing sex with older women and men,” the researchers noted. “As a result, such discussions either never happen or happen awkwardly.” Even best-selling memoirs about the death of a spouse, like Joan Didion’s “The Year of Magical Thinking,” fail to discuss the loss of sexual intimacy, Dr. Radosh said.

Rather than studying widows, she and Ms. Simkin chose to question a sampling of 104 currently partnered women age 55 and older, lest their research add to the distress of bereaved women by raising a “double taboo of death and sex.”

They cited a sarcastic posting from a woman who said she was not a good widow because “a good widow does not crave sex. She certainly doesn’t talk about it…. Apparently, I stink at being a good widow.”

The majority of survey participants said they were currently sexually active, with 86 percent stating that they “enjoyed sex,” the researchers reported. Nearly three in four of the women thought they would miss sex if their partner died, and many said they would want to talk about sex with friends after the death. However, “76 percent said they would want friends to initiate that discussion with them,” rather than bringing it up themselves.

Yet, the researchers found, “even women who said they were comfortable talking about sex reported that it would not occur to them to initiate a discussion about sex if a friend’s partner died.” The older the widowed person, the less likely a friend would be willing to raise the subject of sex. While half of respondents thought they would bring it up with a widowed friend age 40 to 49, only 26 percent would think to discuss it with someone 70 to 79 and only 14 percent if the friend was 80 or older.

But even among young widows, the topic is usually not addressed, said Carole Brody Fleet of Lake Forest, Calif., the author of “Happily Even After” who was widowed at age 40. In an interview she said, “No one brought up my sexuality.” Ms. Fleet, who conducts workshops for widowed people, is forthright in bringing up sex with attendees, some of whom may think they are “terrible people” for even considering it.

She cited “one prevailing emotion: Guilt. Widows don’t discuss the loss of sexual intimacy with friends or mental health professionals because they feel like they’re cheating. They think, ‘How can I feel that?’ But you’re not cheating or casting aspersions on your love for the partner who died.

“You can honor your past, treasure it, but you do not have to live in your past. It’s not an either-or situation. You can incorporate your previous life into the life you’re moving into. People have an endless capacity to love.”

However, Ms. Fleet, who remarried nine years after her husband died, cautioned against acting precipitously when grieving the loss of sexual intimacy. “When you’re missing physical connection with another person, you can make decisions that are not always in your best interest,” she said. “Sex can cloud one’s judgment. Maybe you’re just missing that. It helps to take sex out of the equation and reassess the relationship before becoming sexually intimate.”

Dr. Radosh urges the widowed to bring up grief over the loss of sexual intimacy with a therapist or in a bereavement group. She said, “Even if done awkwardly, make it part of the conversation. Let close friends know this is something you want to talk about. There is a need to normalize this topic.”

Complete Article HERE!

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Understanding and Dealing with the Death of a Partner

By Tony Del Percio

[I]t does not matter if you’re straight, gay, lesbian, bisexual, or transgender: we are all human beings who have the capability to love and be loved. From the moment we are born, we develop bonds and attachments to people, places, and even things. When that bond is separated and detached, especially because of death, we experience grief and loss.

Grief is an intense emotional and psychological suffering related to any type of loss we may experience. Depending on the bond and the relationship, grief can last a few days or several months. Yet for those who have experienced a significant death, grief can last up to two years. Grief does not just involve the emotional but also the physical. The feelings we experience are neither right nor wrong; they just are.

It can be difficult for us in the GLBT community when a partner/spouse dies or even when we go through a serious break up after being together for a long period. Still in our society there are those who will never accept same-sex relationships or marriage or the fact that two people of the same sex can love just as much as a heterosexual couple. I can remember running a support group for men in San Diego whose partners had died, and some of these men had been in long-term relationships and yet had no legal rights over their partners at the time of death. The family of one of the deceased came and took the body and never recognized the two of them as a couple. The surviving partner never had a chance to say goodbye because in many states the next of kin has the legal rights. That is why it is so very important that couples in the GLBT community have the legal papers that will honor the wishes of the couple before a serious illness or death, because you may not have any rights. Luckily, our society is changing and becoming more open, accepting, and acknowledging of same-sex relationships. Love is love.

It also may be difficult for a partner to talk about their loss with family, friends, and coworkers if they are not out. The lack of support leaves those to grieve in what feels like solitary confinement, which could lead to a greater isolation and a deeper depression.

When dealing with a death or a serious break up, we will experience a wide range of emotions and physical reactions. We may experience shock, denial, depression, anger, guilt, abandonment, insomnia, lack of energy, memory problems, confusion, concentration difficulties, forgetfulness, social withdrawal, chest pains, panic attacks, and headaches as well as other symptoms. These are normal reactions. For some, the emotional pain may become so intense that they will find ways to mask their feelings with increased alcohol or drug use or by taking various unhealthy risks because they may feel they have nothing else to live for. Men, in particular, have a difficult time doing their grief work because of what they have been taught over the years: “be strong,” “it’s finished so move on,” “men don’t cry,” or “pull yourself up by the bootstraps.” Over the years, the lack of understanding feelings, expressing them, and dealing with various losses such as coming to terms with sexuality, divorce, abuse, poor self-esteem as well as other losses has led to substance abuse, abusive relationships and suicide. Men must learn to find healthy ways to express feelings and not be embarrassed about them. Some members of the GLBT community may not have the love and support they need in coping and adjusting to death.

For many, the funeral is the easy part. It is the weeks and months after it when reality sets in and we become more aware of the void in our lives. We know in our heads that our loved ones have died, yet our hearts do not want to believe or accept it. As you begin the mourning process, you need to understand that not only are you experiencing grief, but you are also going through a period of stress and adjustment as you begin to make changes in your life now as a single person.

It is important as you begin the mourning process to be open and honest about what has happened and to accept the fact that your loved one has died. Once you can accept and move from your head to your heart, you can begin to heal. As you move through the process, you will feel like you’re on an out-of-control roller coaster ride, especially around birthdays, holidays, and anniversaries. For many, the sixth month often becomes more difficult as reality really sets in. We will experience triggers of sights, smells, sounds — especially music — that will turn a good moment to a bad moment in a second. Depending on the type of death, there may be more heightened feelings such as anger and guilt. It is okay to be angry since we may feel cheated or that we did not have enough time with our loved ones. Guilt is where we say, “If only…” “could have…” “should have…” It is more important that we come to an understanding of our guilt, whether it be real or imaginary. In sudden deaths, there may be unfinished business in the relationship or intense guilt that we may need to get past to truly accept reality. We all do the best we can with what we know at the time.

At some point, it is Important to begin letting go to heal and find a new purpose. Our grief is not about the person dying as it is more about the loss of the relationship: someone to hold, someone to talk and share each day with, someone to cuddle and hold hands with. You will grieve the loss of dreams and a future with your love. You might also experience the loss of identity, especially if you were in a long-term relationship. In other words, “who am I?“ becomes very unclear. It is crucial that we not rush or deny our grief. For some of us, we may find that older unresolved losses from our past come to the forefront.

The following are some helpful hints for dealing with loss: recognize it, you are not alone, give yourself time to heal, keep decision-making to a minimum, beware of being on the rebound, don’t rush into a new relationship, set goals, keep a journal, drink plenty of water and eat well. And know that you will survive.

As you grieve, it is important if you have children to allow them to be open and honest about their feelings and take time to share stories and memories. If the kids are younger, put together a memory box with personal items and photos. Depending on the age of a child, be as open and honest about the death, yet do not overwhelm him or her. Plus, never tell a child something that may need to be undone later. In other words, never lie to a child about the cause of death. Allow the child to participate fully in the funeral, no matter what age he or she may be.

As you grieve the death of your loved one, it may be important to find a support group of others who are experiencing the same things. This may be a difficult task since many of the groups out there are mostly made up of older individuals who have been married for many years. These people may have trouble understanding a same-sex relationship and may not be respectful of your mourning. Otherwise, you might find that you are comfortable sharing your grievances with close friends and family.

If you are reading this and know someone who has experienced the death of a partner/spouse, here are a few tips on how you can help that person cope and adjust: give them your physical presence, just be there. Do rather than ask. Most people who are grieving do not like to ask for help. Keep the subject on them, this is not a time about you. Do not rush the person through their grief or try to find them a new relationship. Never minimize a person’s loss. Be with them for the long haul because for some this may be a long process.

Complete Article HERE!

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Disability and sex are not mutually exclusive

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

Emily Yates: ‘I’m much more than a girl in a wheelchair.’
Emily Yates: ‘I’m much more than a girl in a wheelchair.’

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.

As told to Joan McFadden

• Help and guidance on sexual matters for people with disabilities is available at enhancetheuk.org/enhance

Complete Article HERE!