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Assumptions and Equality

12 August 2015

I hope you’re all well and living in the ‘now’ while exercising, meditating, brain-training, and eating in moderation, after my last post! Thanks so much for those who took the time to read, share, and comment on the last blog. This is my longest blog yet (and they won’t get any longer than this!) so grab and cuppa and get comfortable!

I’d like to talk about the impact that being gay has had on my MS experience. While I realise some people approach this in the ‘what does it matter’ fashion, while others may dismiss it by stating ‘I don’t need to know what you do in private’! I’m really grateful for the opportunity and platform to talk about it.

It is undeniable that there has always been the assumption that everyone is heterosexual until they declare otherwise. I encounter this on a daily basis. If I talk about my ‘partner’ I am often met with a question such as, ‘Oh what’s her name’ or ‘what does she do?’. We’ve even been met by alarm at hotel check-in when the receptionist has realised we booked a king-sized bed and not two singles, even though that was what we requested, “Are you sure you didn’t mean a twin bed- like 2 separate beds?!”. Basically, when you’re gay you don’t just ‘come out’ once (actually not that dissimilar to having a chronic illness that can be mainly invisible). I was once told by someone that I should have specified that my ‘partner’ was my ‘boyfriend’ to make it clear. This person was embarrassed that they’d made a booking for my partner and I using ‘Mr and Mrs’ because, admittedly, my partner has a name that could also be used for a woman, and they thought a two ‘Mr’s’ booking in for an anniversary dinner wasn’t an option! To take their advice and describe my partner of over 10 years as my ‘boyfriend’ would be an insult to the relationship - this isn’t High School!

When I was initially diagnosed, and my partner came to those first half dozen appointments, we were often met with ‘is that your brother’ or ‘your friend can come through to the testing area too’. It didn’t seem to occur to anyone that he could possibly be my partner of over 10 years. It didn’t seem to occur to anyone that he was my rock through it all, through the tears and fears, and through when we couldn’t look at each other for a good month after my diagnosis without one of us crying. Even at MS information nights and education programs we were often met with confusion around my +1, particularly from other participants rather than those running the sessions. It was a conversation ender for some people unfortunately, and I was going to these information nights for help, not judgement.

I’ve also found that a lot of the online content out here in this digital world also assumes that the reader is heterosexual. While I’ve learnt to overlook this over the years, I find it interesting that the authors of so much content don’t consider that their reader may be something other than straight. Language can be very powerful. What’s the answer to this? That’s a difficult one. One simple solution is for authors to think about who their content may reach, and not simply assume it. Always using inclusive language that caters to as many people as possible (yes, we are people too!)  is another obvious way to address this pet hate of mine.

The argument that ‘we don’t need to know about your private life’ is an interesting (and dismissive) one that suggests gay people only have intimate relationships, and not meaningful, loving ones. To me, acknowledging that I’m in a long-term relationship with another man isn’t exposing my private life, it is just sharing ‘my life’! I don’t feel that society has evolved enough for us to comfortably hold hands in public without fear of being verbally or physically attacked. If we did hold hands in public, as most heterosexual couples do, yes it would send an instant and obvious picture to people as to our relationship status,  but I worry that we’d be met with comments like the ones friends have endured like, “I’m fine with gay people but you don’t have to flaunt it”, yet if you look around the streets, holding hands in the ‘norm’ with the majority of couples.

The current debate around Marriage Equality is also worth considering, and is one that I’m very passionate about. The fact I could introduce my partner as my ‘husband’ takes away the awkward questions and conversations that usually follow a ‘partner’ mention. The protection it provides me from a medical point of view is also vital and necessary. While there is some protection in a ‘registered relationship’ scenario (“Would you like to register a relationship with me doesn’t quite have the same ring to it as “Will you marry me? Does it?), this is not the same protection as what marriage would provide. Now that I have MS I realise the importance of protection under the law for my partner and I more than ever, and it has become more of a necessity rather than just wanting/deserving the choice. It reminded my of a really moving story that came to light from the U.S a few years ago, as told through the documentary ‘Bridegroom’.  There is more info here for those interested that outlines how important legal protection, in the form of marriage, really is for gay and lesbians.

So while we're waiting for Marriage Equality (take a seat it might be a while, especially following the rejection of a Coalition free vote last night!) what's the answer in the meantime? I spoke to a good friend last night and ran my latest blog by her for her thoughts, and it inspired the addition of this paragraph. She asked me, "I totally understand why you don't want people to assume if your partner is your brother or friend, but how do people get around that?". Such a fair question that I'm so glad she asked yet hadn’t really occurred to me. After a moment of reflection, I answered that "I think it's the fact the people assume, which makes it awkward to then correct them. I think the answer is people inviting an answer rather than assuming one". This could be done many different ways including:

  • So who's this with you today?

  • So how do you fit into the picture here?

  • I'm Samuel's Neurologist, how do you know him?

Just a few ideas, but basically I think it's quite easy to ask rather than assume without making a big deal out of it. Of course there's another alternative solution, let us marry!

This blog feels a little disjointed, perhaps because the language that’s used in resources and content and the issue of Marriage Equality initially seemed to me like two completely different ones. Although I hadn’t planned to introduce the Marriage Equality debate into this blog, it’s occurred to me as I write, that each issue is influenced by the other. The language used by authors, the medical profession, and the general public, will naturally need to change when the law changes to allow two people to marry regardless of their genders. That norm of heterosexuality will ultimately be challenged, and it will require consideration by everyone, because when the term ‘husband’ or ‘wife’ is used to describe your other half, it really communicates the significance and status of that relationship. To me, and in many medical and legal situations, a registered relationship or civil union just doesn’t cut it.

I certainly see this change as a positive one, and a step forward in addressing the assumptions that are often made by authors, medical professionals, and the general public, usually without any particular intent to offend or ostracise, but made nevertheless. I look forward to the day I can introduce my +1 as my ‘husband’, tick the ‘husband’ box on an admission form instead of the ‘other’ box,  and just move on with my conversations without needing to explain myself and my true love.

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Comments (20)

Thanks so much for this honest and thoughtful blog, Sam. What you advise about asking rather than making assumptions makes so much sense - thank you! That's great wisdom. I think it reflects how I try to speak with people when I meet them, but you've beautifully put it into words and made me question whether I do actually "get it right" as often as I hope. Having read this, I will aim to incorporate your good advice better into my life, both personally and professionally.

Thanks so much for your kind feedback TUO. One of my most considerate friends said to me "I don't think I ever would have thought of it, but I think I'd make those assumptions too, but how you've explained it totally makes sense!!". Like I have done with so many of the blogs I've read on this site, we can all learn from hearing each others stories. I wasn't sure if people would think I was being a bit precious with this post, so I really appreciate the positive feedback.

Great blog Samuel. Very thought provoking. You are so right about people making assumptions. Your advice is great. It is my fervent hope marriage equality happens asap. :)

Thanks Rebecca :) I think most people are actually sick of hearing about it when there is such an easy solution to it. SO many of us just want it passed so that then we can move on with the issues that actually affect the running of the nation!

As strange as this might sound, I can actually relate to the hotel story! A friend of mine and I often when we go away, share a king size bed. We are both heterosexual women, and we share a bed! A couple of times we have been asked if we would prefer two singles to which we have said no! The looks and sniggers and incredible. As far as we are concerned its no ones business! Also know what you mean about coming out about MS, every time I meet a new person and I decide to tell them about my MS, I feel vulnerable and nervous. Are they going to accept me, are they not. Thank You for a great post Samuel.

Yeah I can imagine- the looks and sniggers still happen these days which I just can't believe! I remember reading a story from only a few years ago where a gay couple in NZ were refused a room because they wanted to share a bed (as you do!). I'm not at the stage of really telling strangers about my MS, but have you ever met with negative responses? Thanks for the comment :)

Thanks for the insight into the daily practical difficulties of being partnered with someone of the same sex, Sam. Apart from the fact that the majority of Australians are in favour of marriage equality, it must be intensely frustrating to be subject on the one hand to a law that says it is illegal to discriminate against you, and on the other hand to be subject to a law which apparently does precisely that. I think by virtue of UN declarations and international practice, if not by our imperfect democracy, marriage equality will soon be a part of our society, but in the meantime I'm not sure what could help? A word or phrase invented or adopted by the gay community could help (like the word 'gay' itself) as a temporary measure. 'Fiancee' would still imply the opposite sex I guess, and would not be helpful yet. Could you just use the word 'husband' anyway, and assert your alternate internal reality, until it eventually matches your external reality? Last suggestion, by common use, would be to maybe use a linguistic gender reference from another language (say French) and if one was to refer to Le Fiancee, or Le Husband, we would all know it was a 'work-around' until the parliament catches up...

Thanks for the post Lawrie. I guess I could use 'husband' in the meantime. Just because the government won't allow me to 'technically' use the term,or perhaps I could use 'hopefully-soon-to-be-husband'. Might try that on the next hospital admission form ha! I've always been rather partial to the French language, so I think I prefer your final suggestion. Le Husband it is.... problem solved!

This is a great and very thought-provoking post - and I value the bit about your friend's comments. I know I sometimes wish doctors had treated me differently last year, but sometimes it's a challenge to articulate what is an appropriate way to phrase things. And then there are the people who don't know what to say so they say nothing at all! It's great that you do have the wonderful support of a partner who has stuck by you.

Thanks for the positive feedback Sarah :) Yes I feel very lucky to have a wonderful partner. We often comment that MS has made us stronger and, even though we'd rather not have it in our lives, it has helped us both to put our dreams, hopes, and health into perspective . You're so right though - some people just keep silent which, I think I actually prefer, rather than awkwardly correcting them !

Hmmm...where do I start?? Firstly, I cried when I read this post. The thought of you and your partner not being able to look at each other for a month after your diagnosis without crying was heart wrenching. Secondly, it really made me think about what it must be like for you and your partner. You aren't married and you can't get married (AT THIS STAGE :) You blogged about the "what if's" in a previous post and I hate to go there again, but I'm going to. Legally where would your partner stand if the worst happened? If you couldn't speak, would he be able to speak for you? He would know what you needed but would it matter legally? Which brings me to my next point. Do you have a Power of Attorney? A Medical Directive? I really loved this post, because it made me think... A LOT! I hope I can be more open minded when meeting new people and not ASSUME. I hope I don't judge people before I have even had a chance to talk to them and I hope this makes me a better person. Thank you Sam!

Thank YOU Rachael for your lovely post. Sorry I made you cry, I just wanted to show that gay and lesbian couples are just like any other couple, and I think sharing that particular story really helps to communicate this point and maybe helps people to consider themselves in the same situation. In terms of the legalities, there is definitely better protection than there was a few years ago, but it's much harder (I'd say impossible!) to disputer a marriage certificate in any setting, particularly a medical one. In Victoria, the government has been quite progressive with protecting GLBTI patients, but you still hear of couples being discriminated against because they are not officially classified as 'family' by individual practitioners or hospitals run by faith-based organisations. Circumstances can also change depending on the families involved. I know of people in Victoria who have experienced families'taking over' when it comes to medical situations where the patient can no longer express their own wishes. The same goes for funeral arrangements. There are countless stories of families excluding the partner of the deceased in funeral arrangements. Another area that there is continued discrimination (which I think would cease if couples could marry) in is with Aged-Care services, mainly due to the fact that so many of these services are run by faith-based organisations. There have been many cases of couples who have been together for decades, being split up to stay in different rooms because of their sexuality. There is a proposal in Victoria to open a GLBTI specific Aged-Care facility which I think is pretty amazing! Here is an interesting link about this you may like to read: Also, if you have the time, Comedian Urzlia Carlson recounts a really interesting experience her and her partner had while having their baby. Sadly I don't think even marriage would have helped in this scenario, but it's worth a read. You raise a REALLY good point about Power of Attorney and Medical Directive. You know what, in the midst of my 'what if' sessions, I've never ever thought of that ('what if I've missed other things! Argh!!). Thank-you! I'll get on to this during the week. For me, it just comes down to 'almost equal' isn't equal. Even if 90% of the medical profession are on-board with treating gay and lesbian couples the same way they would treat heterosexual couples, imagine how horrible it would be to be in a 10% scenario. I want my partner to be able to wave a marriage certificate in the face of bigots and say- "That's my husband - listen to ME!". Thanks again for the great questions Rachael (and for the push to set a few things in place.) Cheers, Sam

Well said! I am married (I'm in the US and its new here, but) I completely understand.(inspire of your article, I still feel the need to state she is a woman, I'm a woman; she is my best friend, fiercest advocate, breadwinner, and the absolute love of my life) Being gay is a part of who you are. Having MS is part of your life. The two intertwine. I don't know the answers but I can tell you my wife and I don't hold hands either. I have significant trouble walking and lean on her. The looks are infuriating. Thank you for sharing your thoughts. I hope things get better soon. If you want to chat you know where I am. Shine on.

Thanks for the comment Maria, and for sharing your story. So glad to hear that you are MARRIED- we were so happy when things progressed across the US recently. Have you had any negative reactions when you introduce your wife as your wife? That's so sad that people judge you on a lean and your sexuality. You'd think people would see that scene and think "Wow that lady seems to be struggling to walk but look at that wonderful lady helping her, she obviously cares for her a lot and loves her just as much". Thanks for your well wishes and sharing. Catch you on twitter :) Cheers, Sam

Hi Sam, a really great blog. I've never blogged before(!), but your various blogs resonated so much I just wanted to say thanks for taking the time to share. I live in Melbourne and wish like you, someday I could call my partner "husband" and similarly be "out" with everyone about my MS. Unfortunately, both still seem to attract stigma. I consider myself one of the lucky ones having been diagnosed 25 years ago and I'm still healthy and working. I only commenced drug treatment in the last 12 months not because of any significant disease progression, but rather to help slow down any possible future progression (and because it was an oral med) . I mention this only because having read your blogs on 'what ifs', I'm an example (so far) of what if nothing really bad happens for a long time? I was diagnosed in my early 20's and thought then I'd be condemned to a wheelchair. How wrong I was. All I can say is travel forward hopefully, and don't dwell on the worst possible outcomes because they may never happen. Cheers...

Hi Cameron, Thanks so much for your thoughtful comment and apologies for the delay in responding. I had never blogged before either, but it's really great to be able to share my thoughts and experiences, especially when it generates the discussion that this particular post has. You should give it a go! MS Australia are always looking for Guest Bloggers, and by the sound of it, I think you'd be able to make a really positive contribution. Your story of a diagnosis 25 years ago gave me hope so thank you for sharing that. I too hope that I may be one of the 'lucky ones', but I know I now have the strength to deal with whatever may come along my MS path. You make such a good point with the 'what ifs' - imagine if you'd spent the last 25 years worrying about all of those 'what ifs' and then none of them have eventuated anyway- what a waste of time and worry that would have been. That's the attitude I try and adopt each and every day, and it's so heartening to hear from someone who is also approaching it in the same way. I hope to hear from you again, and I'll look forward to a Guest Blog from you if decide to get involved in that way :) Cheers, Sam

Hi Sam, This is a great blog - very thought provoking and has stimulated some great responses. I work as the Policy Officer in the MS Australia office. I'm currently putting together a MS "issues" document that might end up as our submission to the next Federal Government budget, or might end up as advice to an incoming Federal Government (given we have an election in the next 12 months). Even though I attended the Marriage Equality rally in Melbourne a couple of weeks ago and am a great supporter of marriage equality, until I read your blog, I hadn't thought about adding this issue to our mix of issues. I will now. Thanks again!

Hi Andrew, Thanks so much for the comment. Wow- I feel quite flattered that the blog has sparked your interest in including some of these issues in your next submission to the next Federal Government budget. It goes to show what a great initiative Uninterrupted is in getting some diversity of content/views out there, and how important it is too. My initial submission for consideration to blog talked about being a 'minority within a minority' and I think there are so many other people who would consider themselves in this group. As Cameron outlined in his comment above, there is still so much stigma surrounding the GLBTI community AND the MS community, it can sometimes be a bit of a double whammy! I honestly believe Marriage Equality would help remove some of this stigma, just as the MS awareness campaigns are doing for this community. Thanks again, Sam

Last week, while in the MS/NMO clinic, I saw a new member of the medical team. I had a good friend with me from my support group, who sat in on my entire appointment to support me. This new doc needed to take a complete medical history, so she asked me all kinds of questions. At one point she asked "Are you married?" "Yes, 26 years & happily." Then she follows up with "To.....a......maaaaan?" (Trying to ask in the most polite way possible.) It took me a second because this is the first time anyone ever ask this question and I was struck by how amazing this was. Then I smiled and said "Yes, I guess these are the times were living in now. Yes, to a man." And she said "Well I didn't want to assume." I have been thinking about it ever since because it was such a patient-centred way to ask. I was so struck by it that it's something I have made note of to myself to discuss with my UBC health mentor program students. We live in these times in Canada where the relationships within the LGBTQ community have been recognized and now it's important that in situation where health care providers are collecting person information, they do so in an inclusive way. Thanks for sharing your story. It will help me drive home the point of why this is so important.

Thanks so much for sharing your experience Lelainia, and I'm so happy to hear that your experience inspired discussions with your students. People can feel uncomfortable when they are dealing with the health system (whatever their sexuality/relationship status), as they are often scared and worried, so it really is essential to avoid assumptions, particularly in this field. Thanks again for connecting. I've had a break from blogging, but you've got me back on the platform - so thank you for that too! Cheers, Sam