Segment Two: Relationships & Disclosure

Kevin Schaefer: So um Meyn, let’s start with you . Can you walk us through what that disclosure conversation actually looks like for you when you’re getting to someone getting to know someone new in a relationship ?
Meyn Chavez: Sure . Uh a little bit of background first . I host uh and have hosted a dating panel for Cure SMA at the national conference for 3 years now and it’s something that I feel passionate about because I’ll provide a little story . Uh my very first year at conference um we were at a super tiny relationship like round table . Uh conference was like half the size of what it is now . And a girl was telling me a story about how she met someone on a dating app but intentionally cropped out her wheelchair from her photos and proceeded to explain that she hit it off really well with someone . They were getting along and agreed to go on a coffee date at Starbucks and she was waiting for him at Starbucks and time passed . He didn’t show up . Eventually, he messaged her and said, “I saw you through the window and I didn’t know that you were in the wheelchair . I’m sorry, but I won’t be able to handle that .”
And her story broke my heart because why would she feel that she needed to crop out her wheelchair in the first place ? You know, like we already carry this internalized ableism, I think, and we allow that to disseminate into every component on our of our lives . And I feel like in romance, that’s so saddening . So, after listening to that story, I’m like, no, I really need to tell everyone that it’s okay to disclose your disability . Like if anything, you have to disclose your disability as soon as you can . And I really believe in that because the sooner that you do, the better connections you’ll have and you’ll weed out all the bad ones that don’t want to deal with it, so to speak .
And so why not give yourself the opportunity to be honest and find a true connection that will accept you just as you are . So that being said, uh with online dating and the apps and everything, you just got to say it like like be open about it . Post a full body picture . Um, but at the same time that means you don’t have to allow any kind of disrespect . So some people will be intrusive or like be asking questions that are inappropriate like, “Oh, what’s wrong with you ?” You know, anything like that . That doesn’t mean you have to tolerate that either, but but find a balance where you’re being honest to potential dating partners and also respectful to your own boundaries and how much you want to disclose how far into the conversation .
Um, I feel like it’s it’s just the best way to communicate, especially with a romantic partner, because we all deserve a satisfying and fulfilling and respectful relationship, no matter what our disability is . So, uh, I think I just really think it’s important to disclose right away . And a lot of my peers who don’t, I gently try to convince them to do so . Uh again, just because we carry so much internalized ableism and it’s not anybody’s fault . It’s just society’s fault for teaching us this general idea that we should look less disabled, whatever that means . But um I’ll say it today and I’ll say it every day for the rest of my life . If you’re in a wheelchair, if you have tubing of any kind, if you have assisted devices, if you have anything, anything, anything, you deserve to be open, completely yourself, honest about it . And always tell your potential dating partner all the things that you utilize because they’re parts that help you live . They’re parts of you and they help you be who you are and carry on about your day and there’s no shame in that whatsoever .
Kevin Schaefer: I love that Meyn and thank you so much for sharing uh your perspective there . That was great . And Mindy, I know you have a different perspective in that you’ve been married for a long time, but is there anything you want to add to that or share on your perspective in regards to uh disclosing your disability when you’re in a relationship ?
Mindy Henderson: Yeah, absolutely . I mean, Meyn did a fantastic job and I I agree with with what she had to say . You know, I’ve I’ve been off the market for about 25 years . Um, so it’s been a while since I’ve been in the dating apps and things, but I remember it really really well . And you know, it’s rejection’s not fun . Um, you know, it’s but it’s it’s something that inevitably comes along with dating . It just does for all of us, no matter who you are . Um, and I I think that I um the way that I ultimately decided to approach my um my dating life was I I wasn’t interested in having my time wasted, you know, and so I like Meyn said, I put photos of myself in my wheelchair um on my my app or my um my profile and figured that that was, you’re going to be its own tool for weeding out the wrong people . Um, and so, you know, I I did um find the right person, which I’m I’m grateful for, and I did meet him on an app, um, a dating app . So, um, you know, I I you know, I think if you can be patient and be true to who you are, um, that’s that goes a long way .
The other thing that I’ll just throw out there is that, you know, I I think that if you do disclose um that you have a disability and and you know, ultimately end up meeting somebody for a live date or or whatever . You know, sometimes it’s I can’control what their assumptions are going to be about my life with a disability, but I can control replacing those assumptions with information . And I think, you know, you don’t want to sit there on your first date and rattle off all of your medical history . That’s that’s not fun for me and it’s probably not going to be fun for them . Um, and so, you know, I think that what I found was that, you know, organically over time and and with a lot of conversations, information about me and my lifestyle and um, you know, what my interests are and how I do X, Y, or Z . Um, it it all became part of the bigger picture as we got to know know each other . So, um it’s it’s hard and there’s no way around that . Um but I I would encourage everyone to empower yourself and do what feels good to you . Um and if if you’re true to yourself, you’re going to draw the right people in .
Kevin Schaefer: I love that . Thank you both . And it’s really encouraging to hear your stories, your thoughts, and while there are numerous challenges um surrounding dating with a disability, uh ultimately if you it sounds like what you’re both saying is that if you believe in yourself and um you’re not afraid to share that with others, like you know, good things will come from that . Um and on a positive note, our polls showed high average levels of felt support among community members who are currently in long-term relationships . Um, so Mindy, I think your story speaks to that uh really well . And um I know I would love to actually spend more time on this subject . I know we have to keep rolling along here . Um and this has been great, but um we did want to provide just a few grounding principles for approaching disclosing your SMA in relationships . Um so a few tips we have based on all this data is:
Lead with confidence, not apologies: Frame SMA as a descriptive fact about your life, not something someone needs to accommodate out of pity .
Pace the details: Early dates require basic context, not your entire clinical history .
Be specific about support: Clearly define what help looks like so that your partner doesn’t have to guess .
Allow processing room: Give new partners a moment to absorb information without assuming hesitation means rejection .
Um just giving that time . Um and if explaining SMA feels intimidating, remember that communication is a skill you refine over time, not a personal shortcoming . Um Dr. Al, I think you have plenty of experience in that uh with your work especially . But yeah .
Dr. Al Friedman: Yes. Absolutely .