Written submission from Mark Ward (HSC0086)
1. About Mark
From my earliest memories I have always felt different. This became even more obvious when at the age of three, I was diagnosed with severe haemophilia A. Growing up in the institution of the NHS during the 1970’s in Britain was tough simply because there were no methods of support in place, such as special needs in schools. I have always been a pathfinder and was the first severe haemophiliac to attend a “normal” school in Hertfordshire. I was the school freak, a label which stayed with me throughout my entire education. With joint damage to my right elbow, the homophobic name calling and abuses I was subjected to were seen as nasty school yard teasing. This bullying only increased when AIDS first shook the world and we haemophiliacs were at the centre of this crisis. Anti-gay nicknames and harassment escalated which led me to seek advice. Was I gay? Was it because I had been infected with the so called “gay plague”?
I was told by my haemophilia treatment centre, “there are no gay haemophiliacs” when I first asked. With total contempt for the teenage boy who was living in sheer terror, to be told my feelings were abnormal was truly crushing. The adverse effect impacted on me mentally. I was effectively abandoned, isolated and seen by some as a figure of hate whilst at the same time the hospital used me for research. At the age of sixteen I pursued my dreams despite being told to “get real” numerous times. I joined British Airways YTS Scheme in September of 1985. There for the first time I met people who accepted me for being me. By the age of eighteen I had a number of gay friends who eventually took me out on the London gay scene which made me question everything. Since then I have worked at the biggest LGBT nightclub in the UK, been a volunteer for the West Midlands Lesbian & Gay Switchboard, The Terrence Higgins Trust and Open Door, a Brighton based HIV drop in centre. As a TaintedBlood Committee member, I have devoted my time to the pursuit of justice which has allowed me to meet a variety of people. I was able to present evidence at a Science & Technology, Parliamentary Select Committee hearing on vCJD. I am extremely proud to be a stakeholder for Brighton & Hove, UNAIDS 90 90 90 Fast Track City status with tackling HIV stigma as one of our main aims.
At the same time I have been forced to fight for recognition and equality within the infected bleeding disorder community. My independent voluntary work focuses on ensuring the safety of others, protecting the next generations and educating those whose responsibility it is to provide our care. Using my unique knowledge whilst at the same time challenging established discrimination and demanding equality in care for the Bleeding Disorder / Disabled / LGBT community.
- What evidence is there that LGBT people with other protected characteristics (older people, people from BAME communities, disabled people) face particular problems with discrimination in or access to health services, and what actions could be taken to improve health and social care experiences and outcomes for these different groups?
2.1 A Brief History of my Campaign for Equality within Haemophilia
For decades people with disabilities, including the bleeding disorder community have been subject to offensive behaviour and attitudes including intimidation, cruelty and discrimination. Our equal rights have not only been ignored but there appears to be a consistent refusal to listen to us, with an objection to recognising all those requiring support. This has not been exclusive to The UK Haemophilia Society but also includes government officials and health professionals within the NHS. Haemophilia Societies around the world do not have or provide information to people from the LGBT community, living with a bleeding disorder.
Globally this minority group of people are neglected, breaching a “duty of care” which should be provided to the entire community, regardless of their sexuality. It is also recognised fears about sex, sexuality and haemophilia terribly affected information given during the AIDS crisis in the 1980’s. Sadly the stigma and hysteria of the AIDS crisis still influences the manner in which the subject of sexuality is dealt with today.
At that time there were approximately 10,000 men with a bleeding disorder in the UK and based on studies carried out in the general population, (1 in 10) it is estimated that over a thousand could have experience of having sex with men.
So far, we have already identified a wide range of different attitudes towards people with bleeding disorders who are gay or bi-sexual here in the UK. We also have a number of examples where people have encountered dangerous situations due to a lack of information or support. Wild assumptions and stereotypical attitudes need to be overcome and looking at those from the LGBT community as people instead of a sexual act or a condition has been almost impossible.
In 2002, The UK Haemophilia Society had received calls from men with bleeding disorders asking for advice on issues concerning men who want to have sex with men, myself included. From the feedback, it soon became clear this was not a subject anyone wished to approach. We identified there was no information which could be offered and an attempt was made to bring about change to the institutionalised homophobic attitude of those, both at the Society and those who provide medical care. In some cases patients were told by doctors and nurses “there is no such thing as a gay haemophiliac” or it was “all in your mind, you’ll get over it”. With no information or support available and medical professionals refusing to talk to patients about their sexuality, it was obvious something had to be done.
This prompted the start of the “UK Men’s Project” in 2003, and a supportive booklet was published by the UK Haemophilia Society, entitled “You don’t have to be straight to take Factor 8”.
The launch of this ground-breaking project included a presentation to the World Federation of Hemophilia Congress, held in Bangkok, in 2004, attended by me and one other gay haemophiliac.
The booklet was produced by gay men with haemophilia who wanted to share their experience and offer some words of advice, along with answers to some of the questions people may have. A supporting training programme and fact sheet for medical staff was also prepared, in order to give those who did not feel comfortable talking about this subject a point of reference and guidance. Some haemophilia centres refused to display the publication or acknowledge the need for advice on this subject, whilst others embraced it.
However, because of hostile attitudes towards sex and sexuality the project was axed and stopped from developing further as intended. I continued with my calls for equality and most of all, recognition for other LGBT haemophiliacs to obtain support.
During the process to elect the next Mayor of London in September 2011, the issue of, “the ban on gay men donating blood” highlighted there was still no information to offer on the subject of blood, blood products, bleeding disorders and sexuality. I believed the interview aired by the BBC would ignite the discussion surrounding this ignored part of the bleeding disorder community and lay down the foundations to ensure the next generations were taught about the advancements in HIV treatment. https://www.youtube.com/watch?v=0WTL5rh71HY&t=5s
The need for advice, support and factual guidance appeared to be finally understood. Despite further promises and numerous conversations the Haemophilia Society board refused to work with me. I was told privately afterwards, the board did not want to be seen to promote homosexuality.
The decision to take on this project independently was an easy one to make. Renamed “Haemosexual” I was able to raise awareness about many different aspects of living as an openly gay man with a disability. For example: LGBT News, Chemsex, LGBT Rights, Mental Health, Gay Pride, the growing anti-LGBT attitudes and the safety issues around the world for those of us with a bleeding disorder who may wish to travel.
An updated booklet was written and is available on the Haemosexual website. https://www.haemosexual.com/category/information/booklet/
The project aims set out below have a clear and defined purpose which can be adopted across the health and social care sector. With minor changes to embrace LGBT healthcare to other disabilities and conditions.
https://www.haemosexual.com/aims/
Haemosexual intends to underline the need for better education and understanding of sexual diversity within the global bleeding disorder community. I will be adding a voice and knowledge of the unique issues concerning gay and bi-sexual people with bleeding disorders, which are currently not discussed.
No longer will we be out of sight out of mind. We are here and our lives are as important as everyone else with a disability or bleeding disorder.
In February 2014, following major changes at the UK Haemophilia Society, the new CEO, Liz Carroll, welcomed the development of the project and the inclusion of those from the LGBT community. We have a good relationship and many of the UK Haemophilia Society staff are fully supportive of what I am achieving. Progress is being made.
Over the past four years I continued my campaigning in relation to the contaminated blood scandal and the unique effects it has had on us LGBT infected haemophilacs. This has also led to professional relationships and media coverage/contacts.
The UK Haemophilia Society has approached me to assist in the writing of their booklet aimed at discussing sex for teenagers. In an act of solidarity and recognition the Haemophilia Society changed their logo to incorporate the rainbow flag in support of London Gay Pride 2018. This idea is one which I am hoping will be embraced by other national organisations. I am currently in talks with the EHC regarding this idea.
Already, the death of a young man has happened due to intolerance. He lost his life through neglect which could have been completely avoided.
2.2 European Haemophilia Consortium (EHC)
I have approached the European Haemophilia Consortium (EHC) with a request to consider creating the role of LGBT / Diversity Ambassador. My accompanying statement below explains why I feel this figure of inclusion is essential.
“I believe the European body responsible for all those with a bleeding disorder (the EHC) are ideally placed to facilitate drawing enough people together to co-ordinate the work and provide NMOs (National Member Organisations) with the support and or materials they need to improve the services they can offer to their members. Doing it on a Europe wide level would also avoid unnecessary duplication.
Working with an Ambassador would mean that the development of this would/could be done without making excessive demands on the EHC office.
Recognition is the first step towards inclusion this means embracing diversity.
An Ambassador would send a clear message to the global bleeding disorder community how serious the EHC is about equality as well as their commitment to enabling people to make informed decisions whilst combating discrimination.
Currently, if a young man contacts any LGBT organisation they are unable to discuss specialist medical conditions such as a bleeding disorder. Equally, most haemophilia societies/foundations around the world will struggle to provide the basic information needed.
Mental/sexual health can be compromised by fear of the unknown, rejection and stigma. This in turn will impact on the amount of risk taking and implications towards a person’s identity. Making the topic available to discussion along with their bleeding disorder will not only educate but can help identify any sexual and mental health problems, including suicidal thoughts, domestic violence and abuse.
Peer pressure and the current obsessions of body image in today’s society, cyber bullying and chemsex are very real dangers for all those with a bleeding disorder not only those is the LGBT community. Although, these pressures can be heightened due to the unique nature of the gay scene.
Personal safety and awareness is an issue for all those with a bleeding disorder to be conscious of but especially those who are LGBT. For example with better access to treatment more people are travelling, these can hold very specific dangers.
With modern technology placing vast amounts of data at everyone’s fingertips we are now in an unchartered territory when applying sex education. If we allow young men and women to believe what they see in pornographic images or videos are the right ways to have any form of sexual relationship this will lead to long term physical damage, treatment costs and requirements climbing.”
2.3 World Federation of Hemophilia (WFH)
The relationship I have with the WFH has always felt as if they are keeping me at arm’s length. They are fully aware LGBT people with a bleeding disorder exist but they have constantly refused to provide any form of acknowledgment or support.
Following my presentation in 2004 at the Bangkok Congress no official public recognition for people with a bleeding disorder who identify as LGBT has been made available. This is something I struggle to comprehend as I know of WFH board members, national organisation CEO’s and others who work within the bleeding disorder community who are gay.
In order to better communicate with the WFH, EHC and other haemophilia organisations, health and social care providers by using factual data I undertook some research. This was to identify what information was available to the bleeding disorder community around the world. I was truly shocked at some of the few responses I received. One CEO wrote, “As we have not identified any LGBT haemophiliacs we do not need to provide any information or support”.
The WFH along with almost all haemophilia organisations around the world simply ignores this part of the community. This was put to the test by typing the word “gay” into the search of the website of as many haemophilia organisations as I could, including the WFH website. The only item available on the WFH website relates to the ban on gay men donating blood.
On June 12, 2016, Omar Mateen, a 29-year-old security guard, killed 49 people and wounded 53 others in a terrorist attack inside Pulse, a gay nightclub in Orlando, Florida, United States. Orlando Police Department (OPD) officers shot and killed him after a three-hour standoff.
Pulse was hosting a "Latin Night," and thus, most of the victims were Hispanic. It is the deadliest incident of violence against LGBT people in U.S. history and the deadliest terrorist attack in the U.S. since the September 11 attacks in 2001. At the time, it was the deadliest mass shooting by a single shooter in the U.S.
In light of this horrific event I immediately contacted the WFH as the 2016 Congress was due to take place in Orlando shortly after the shooting. I asked what action could be taken, offering reassurances of safety. Would any additional security measures now be put in place and was there any advice we could offer to those LGBT delegates who would be attending the conference? Sadly, I never received a reply. A friend who has a contact within the WFH was told the statement was put out in a rush and not mentioning the LGBT community was an oversight.
The following statement was published on the Haemosexual website and social media.
http://www.haemosexual.com/wp-content/uploads/2016/06/Statement-WFH-Orlando-2016.pdf
Despite 49 people tragically losing their lives in the Orlando attack, on the 23rd August 2018, I contacted the WFH regarding my growing concerns towards the upcoming World Congress 2020 which is to be held in Kuala Lumpur, Malaysia.
I am still in the process of dialogue with the WFH over this matter. There is limited further information to provide at this time.
2.4 Infected Blood Public Inquiry
On the eve of my first meeting with Sir Brian Langstaff, Chair of the Infected Blood Public Inquiry, an online American journalist published an interview with me. Amongst other things it covered the difficulties I have experienced over the years as an openly gay man with a bleeding disorder.
The full interview can be read here: http://www.haemosexual.com/lone-voice-lgbtq-haemophiliacs/
Having read the interview, Sir Brian and his team have committed to an inclusive and transparent inquiry with regard to the Public Sector Equality Duty. The inquiry will also include discrimination and the additional negative impact some of us have had to face. Further information related to the discrimination and exclusion of LGBT victims has been provided to the inquiry team. Hopefully this will be heard during 2019.
The full terms of reference can be seen here:
Discrimination in health and social care:
3. What does the evidence show about levels of discrimination against LGBT people when they access health and social care? What types of discrimination are faced and in what areas of health or social care?
Breaches of confidentiality and homophobic abuses are still regular occurrences. Despite my many attempts to report them no official investigations would take place. I had been branded as a troublemaker and my claims were never taken seriously. There are too many to mention and the examples below offer a small insight into what I have been subjected to over the years.
- Information taken from my medical notes show, whilst admitted for knee surgery in 1983, aged fourteen the orthopaedic surgeon commented about my possible sexuality, (“A bright and intelligent young man I believe with homosexual tendencies”). Following the knee surgery, upon discharge my HIV status was given by a haemophilia centre sister shouting it across the waiting room.
- Different and sometimes conflicting information about HIV was provided to my heterosexual brother and friends. Even when I later took paper cuttings from the gay press to discuss potential treatments I was often ridiculed or met with hostility. Information was never provided to prevent hate towards the LGBT community as our knowledge of AIDS and our infections advanced.
- In 1995, I was diagnosed with Cytomegalovirus (CMV). Upon asking how I could have got it, my haemophilia centre director informed me with total disregard to my privacy, in front of my parents, “it’s because of your homosexual lifestyle”. I was in fact infected again through blood products.
- Across the years my sexuality has always been an “off limits” subject. Staff members refused to discuss anything related to sexual health or other concerns I was facing. I was once told by a senior haemophilia sister, “this is a family orientated unit and we don’t talk about those things”. They even denied any form of support during extremely traumatic times in my life. Doctors/Consultants and others have refused to acknowledge my now husband. Even following our civil partnership in 2012 and despite a number of requests, the hospital would not update my medical notes. My status read single with my Mother as next of kin.
- Haemophilia guidelines state sexual partners and close family members should be vaccinated against Hepatitis B. When I asked to arrange this for my husband my request was denied. Despite numerous attempts the Royal Free refused to vaccinate him. I then arranged for the vaccination to take place at our GP surgery and I paid for the vaccine to be given.
- An urologist asked me with my husband present if me and my “wife had finished having children”? He also ignored my husband when he spoke.
- As my care at the Royal Free deteriorated my PTSD and anxiety levels increased. I wrote to the chief executive of the hospital asking him to investigate what I was being subjected too as I feared for my life. I was issued with a formal warning for crying in a haemophilia review and upsetting the doctor, without them going through the correct procedures which are in place. I arranged a couple of face to face meetings with the head of safeguarding at the hospital along with the PALS manager. The head of safeguarding told me “homophobia doesn’t exist at the Royal Free because this is Hampstead”. My reply was, “I live in Brighton and we sadly get queer bashings happen on a regular basis”.
Later in 2014, I was physically assaulted by the haemophilia nurse consultant I had made a formal complaint about. It was reported to the Metropolitan Police and the Nursing & Midwifery Council. The hospital refused to assist the police with their investigation. Finally, over a year later the CPS dropped the case due to not being able to guarantee a conviction. The NMC refused to investigate as assault, bullying, intimidation and homophobic abuses do not meet their criteria. This incident was reported to the local authorities, a Trust Board member who also refused to investigate. This led me to have a psychological crisis in which I seriously thought about taking my own life. I never returned to the hospital.
- Discrimination also comes from other patients / people with chronic illnesses. Following my decision to go public about my infections through the use of contaminated blood products. It was suggested, “maybe I shouldn’t do too much media work as everyone will think all haemophiliacs are gay”.
- What are the causes of that discrimination?
There are many causes for any form of discrimination /stigma such as the environment children are raised in or the information society has provided to it along with their education and the rise of globalism. Governments have to shoulder some of the blame for this as it is their choice of language which stirs up divisions, fear and hate. If we take for example the famous “Rivers of Blood” speech by Enoch Powell. This was designed to create fear of those coming to our shores from other parts of the Empire.
Since 2010 the demonising of people who receive benefits has placed disabled people at the forefront of the growing national anger. George Osborne referred to “hardworking people going out to work whilst those on benefits are still in bed with the curtains drawn”. Implying, disabled equals second class citizen in the UK. Those same sentiments devised to stir up emotions will of course have the desired effect across all areas of health and social care. This will then add fuel to the fire of some already harbouring prejudices, contempt and homophobic attitudes at all levels.
More recently we have seen a surge in anti-LGBT hatred around the world. Countries like Iran, Uganda, Russia, Malaysia, Indonesia, parts of the EU and the Commonwealth. Many doctors also come from developing countries, India, Pakistan, throughout the Middle East and others.
We must not forget countries such as the Philippines, although they are a very accepting people the country has a devout religious population.
Citizens from these parts of the world and many others have had strict views on homosexuality forced onto them from birth. They come from societies where imprisonment or death is the acceptable way to deal with the LGBT community.
Now bring those citizens along with their views into the NHS, onto hospital wards and require them to care for people they believe should be punished or put to death.
Over the many years I have met some truly wonderful people from almost every corner of the world. However, ethnicity and religious beliefs have been the constant recurring link. Ignorance about patient’s conditions leads to stigma and neglect.
1. During the AIDS crisis in the 1980’s, the language used by governments and media around the world regarding HIV was degrading and abhorrent. The dirty, sleazy underbelly of society were the ones spreading these sinful diseases.
A similar attitude of contempt has continued with the rise in awareness of victims suffering from Hepatitis C. Labelled as drug addicts, alcoholics and again homosexuals.
2. Haemophiliacs were told it was a huge accident and it was “the fault of the gay community” and “the blood from gays introduced the virus into the blood supply”. We also had public statements from Health Ministers saying “no good god fearing Christian need fear AIDS”. Another stigmatising and derogatory term used more in the United States crossed the Atlantic, we were known as part of the “Four H Club”
3. In 1988, the now debunked Macfarlane Trust was established to alleviate the suffering of haemophiliacs and their families infected and affected by HIV from contaminated blood products. The manner in which the trust deeds were written excluded same sex couples. The wording was very specific as it only stated “wives, girlfriends, infected intimates or widows”. This only came to light when I met my partner in 2003. My social worker suggested I register him as he would need to be named in order to receive my estate.
Also, I would have an extra £5 added to my ex-gracia payments each month. This was at first rejected and the battle for equality with the support schemes began. Every time adjustments were made to the scheme, the LGBT beneficiaries were excluded.
I requested numerous meetings with the CEO Jan Barlow to discuss how we could work together to ensure the inclusion of all and the language used was all-inclusive. She completely ignored me and I never spoke one word to her throughout the years she spent there before being shut down in 2017.
4. Following receipt of a letter which provided information for “widows” to apply for financial grants to a charity I contacted the MFT to ask if this was also available for men to apply. I was told it was “not”. I again asked to speak with Jan Barlow as I believed it to be discriminatory, she refused to speak to me. I then made the decision to tackle this head on and told the office member who had answered the telephone if Jan Barlow did not speak to me I would call the police to report a homophobic offence. I believe Jan Barlow is a bigot and her constant refusal to speak to me whilst she speaks to widows is because of my sexuality. As I gathered my thoughts to prepare for my call to the police a text came through from a friend who was an MFT Trustee, which explained “from now on the term widow will be all-inclusive”. I never had anything in writing nor support from the wider community or Haemophilia Society. Before the current support scheme EIBSS was established in 2017 I contacted the MFT and was given reassurance the new scheme in England would include same sex couples.
5. On one of my many admissions into hospital the four man ward was visited by four people who split into two groups. They approached the beds of the other men and spoke to them about God, their religious beliefs and said a prayer for them, asking for a swift recovery. They all then stood in the middle of the room with their backs to me and said “god bless and get well”. They looked directly at me as if I were something the cat had dragged in and walked out without saying another word.
6. In 2009, from the moment I was admitted into hospital for ankle surgery the staff nurse would suck his teeth. I was left to complete my own admission forms which was to include permission for my partner to be given updates and any other information about me. I was made to feel dirty, certainly being judged and subjected to derogatory remarks by various members of staff, including the tea lady.
The nurse in charge even refused to call my HIV doctor when I told him I was feeling unwell because, in his words, “you’re trying to be a very nice man who constantly seeks attention, lay there and shut up”. He then sucked his teeth and walked away. Twenty Six hours later, after my partner called the HIV unit the doctor came to see me. Further insults continued after the doctor had left. No medical professional was willing to speak to me about this incident despite a number of attempts. I was again accused of “trying to cause trouble”.
7. In 2014, whilst admitted for more ankle surgery, the nurse in charge of my care refused to speak to me. She came to my bedside, aggressively grabbed at my arm/hand to complete her routine observations.
So I waited until everyone around me was asleep, almost midnight and asked the nurse if she “knew what was wrong with me”? She replied, “I saw it in your notes”. After a few more comments I told her how I had actually become infected with HIV due to contaminated blood products as a little boy. Tears came down her face and she said “I heard of this in my country, bless you my son”. From that moment on, she could not have been more compassionate or caring. How a nurse should be. This nurse was from Uganda, one of the most hateful countries in the world to the LGBT community.
The personal examples of discrimination, neglect and lack of support can sadly be transferred to almost any other health condition or disability. If professionals look at a person as a condition rather than a sexual being the compassion is removed and the ability to provide the right care for that person is then compromised.
- What actions have been taken by health and social care providers to reduce levels of discrimination? How effective have these actions been?
There has been a growing willingness in the UK bleeding disorder community to become more inclusive over the past couple of years.
However, very little has actually changed, least of all at the frontline with many haemophilia centre directors / doctors unwilling to discuss sexuality with their patients. Repeating the abuses of the past as more lives are thrown into turmoil.
I have reached out on many occasions to assist in the acknowledgment and support of those living with a bleeding disorder who identify as LGBT. Sadly, I am constantly stonewalled. Seeing minimal action taken as attitudes along with prejudices are still widely accepted. Those who are subjected to homophobia, abuses or stigma within the health and social care setting are unable to have their complaints accepted let alone investigated. This is due to a weakness in the blame culture so many have fallen foul of throughout the NHS and healthcare sector.
In a comment for this submission a younger haemophilia patient told me:
“During an NHS review event which looked at the transition from paediatric to adult haemophilia care, I raised the subject of sexuality. I was told “you have to ask for that”.
“In the haemophilia centre there are no fliers or posters regarding LGBT patients and it’s something that was never mentioned at all”.
Attitudes towards this part of the community has to change. Coming from central government, local authorities and businesses, down through the ranks. Leading by example can not only affect the LGBT community but the wider population in every day scenarios. Making health and social care better for everyone through understanding rather than ignorance is achievable. In turn, preventing sick and disabled people from being forced to face constant fear of judgement.
A zero tolerance of abuse towards health and social care staff is already published within hospitals and care settings. This must now be made perfectly clear, with supporting action for those seeking care services. Every doctor, nurse or other health and social care professional, providing treatment and/or care has to perform their duties with dignity and respect for the person.
Unfortunately, the desire of some who are trying to embrace change is being blocked by those with outdated personal prejudices not fit for the 21st century.
We must take the subject of sexuality forward sensitively with better training for those who provide care. Ensuring all health and social care setting take on a more informative, medically sound and preventative approach coupled with compassion and care. The duty to protect people from harm has to be paramount to ensure they feel like a complete person rather than just a bleeding disorder or a condition. A way of life cannot be sterilized to suit ignorance.
I would like to complete my submission with the Haemosexual mission statement drafted back in April of 2018.
In the 1960’s, with the advancements in treatment for people born with bleeding disorders, a rise in viral contaminations globally was also being documented. By the late 1970’s and early 1980’s almost every British haemophiliac had been infected with Hepatitis C and 1249 with HIV. Today, there are only 248 still living with HIV, of which I am one.
For over 25 years I have reached out to many haemophilia organisations around the world trying to raise awareness of the need for sexual health education as well as the battle for equality. If one takes a look at the website of any official haemophilia organisation, anywhere in the world, you will see the bleeding disorders community, in 2018 still doesn’t recognise there are LGBT haemophiliacs.
Despite numerous attempts to tackle both HIV stigma and discrimination across two communities so tragically torn apart by multiple viruses. I have called for a change in the way people are viewed, a whole person approach offering a unique knowledge which really could prevent harm, possibly even save lives. Yet it appears intolerance and homophobia is thriving.
My experience of working for the Lesbian & Gay Switchboard identified huge cracks in support which people with any disability can easily fall into. Then of course we must not forget the damaging effects this has on a person’s mental wellbeing.
In the height of the AIDS crisis I asked doctors and nurses at my haemophilia centre a question “are there many gay haemophiliacs”? I was told “no, there aren’t any”. It is easy to see that same view is still shared by many today in the absence of recognition, support or information, despite equality laws being in place to prevent such discrimination.
I set up Haemosexual in 2014 and more recently Haemosexual Australia to approach the communities, various organisations, professionals, and allies directly. If the haemophilia world will not provide the people they have a duty of care too with factual information then someone else must. This much needed support can come from those who really are trying to make the world better, more equal and safer for everyone to live in.