LiaSeth

Just what does a disabled person look like?

When most people look at me, they see a healthy-looking 23-year-old. What virtually none of them know is that for at least the last seven years of my life, I've had hypermobility syndrome, a disabling condition that's unbelievably painful. It's invisible to outsiders, but I become exhausted by walking or just standing for more than a minute or two and I'm unusually prone to sprains and dislocations. For the most part, I've been able to manage on my own. Unfortunately, not everyone with whom I interact is aware of — or understanding about — my disability.

In January, I was riding MUNI and sat in one of those blue seats reserved for seniors and the disabled. The bus got crowded. On another day I might have given my seat to a senior, but I had twisted my knee that morning and standing wasn't an option. Suddenly, a woman came uncomfortably close to my face and said, "You should really give your seat to the older people on this bus." I calmly replied, "Actually, I'm disabled so I need to be sitting down right now." I thought that would end it — it has in the past — but she turned around and spat on me. No one defended me. No one said anything. Many people were staring.

I know this is going to happen again — to me and to others in a similar position. I hate feeling guilty about not getting up. I really hate the looks people give me when I board the bus and sit in those blue seats, like I'm so lazy that I took the front seat just because it was open.

Just because I'm young doesn't mean I'm able-bodied. Not every disability requires crutches or a wheelchair or is obvious to others. Mine is invisible, hidden in my joints and muscles, and you wouldn't know that I hurt every single day if I didn't tell you. And there are many disabled people like me.

I don't know how the people of San Francisco can be more educated about this, but I hope that one day, strangers will accept the fact that I am disabled without questioning glances, accusations…or their saliva.

With a Perspective, I'm Lia Seth.

Lia Seth lives in San Francisco and works as a bank associate in Palo Alto.

  • Tim White

    I wish I could ride with you to keep this from happening. ūüôĀ

  • Tom Clement

    Lia, my heart goes out to you. I’d like to think most (or at least many) people would defend you in those circumstances, but I suppose what happened happened. Thank you for writing this perspective.

    • Lia Seth

      Tom – I’d like to think so too, but I guess that’s not always the reality. I hope this perspective makes people rethink the way they think about and react to strangers in public.

  • Andrea

    I feel the same way. ¬†You can’t tell that I’m disabled from the outside; I wish people could see my x-rays and see my crippling body. ¬†I have severe spinal stenosis and have chronic pain and also cannot stand for more than a few minutes. ¬†My back muscles go into spasms and I take medication for the pain and spasms. ¬†I had to tell someone on BART oneday to please get up so I could sit in the disabled seating. ¬†But I look healthy and I know people are irked when they see me parking in a disabled spot even though I have disabled plates. ¬†I always say, “unless you’re vomiting blood” nobody thinks you’re disabled.

    • Lia Seth

      Andrea – Thanks so much for your message. I can definitely relate to all those feelings and I’ve received the same reactions when I need to sit on public transportation and when I park in blue spaces. I can only hope that people start rethinking the way they look at strangers in public.

  • Lia, please know you aren’t alone. I have mental disabilities,, and sometimes sit in those seat when I feel my panic attacks starting. While I’ve never been spat on, it’s come close to that..

    I do my best to educate people, and I hope that by your brave action you’ve done the same.¬†

    • Lia Seth

      Lori –¬†
      Thanks so much for your response. It means a lot to me to hear that this piece might help to educate people and change perceptions.

  • Christian L. Frock

    My mother and one of my best friends from college are both disabled without typical outward signs of disability. I have been with both of them when people have accosted them about not “looking” disabled.

    Take heart – you are not alone.

    • Lia Seth

      Christian – thanks so much for your comment! Often, just the reminder that I’m not the only one with an invisible disability helps a lot.

  • the engineer in me makes me want to find a solution.¬†¬†Perhaps there is some form of bracelet (like those with medicine allergies have) that can mention your disability – that you could point to, when someone says something like that…

    • Lia Seth

      Dale – I appreciate your response and definitely understand that you mean no disrespect, but I don’t think I should have to wear a special marker in order to ensure basic respect from strangers. That being said, I’ve tried taking out my handicapped placard for my car or my special RTC Clipper card; people tend to just scoff in disbelief. This is an issue of perception and I’d prefer not to make my disability so visible.

      • Justinad

        I have the same disorder and POTS which can cause me to black out if I stand too long. I wear a medical bracelet that I can coordinate with my outfit. It’s good if I need medical attention, but I wear it more to keep people from staring.

  • SLM

    As a similarly disabled person with an “invisible illness”, mitochondrial disease, I try to find a seat farther back on MUNI, or stand on days I am able, but increasingly if I am trying to get some groceries home or just too tired, trembling, have migraines, or whatever that day brings, I really need to sit. Yes, I look normal and healthy, but looks are deceiving. I know where you are coming from Lia, and sorry you have to deal with that treatment in addition to illness. The best we can do is raise awareness.

    • Lia Seth

      SLM – thanks so much for your comment. It always helps to hear from people who go through the same thing I do, especially here in San Francisco! Any other ideas on how to raise awareness would be hugely appreciated as well.

  • Lindsey

    You’re also not alone because if you’re ever riding with friends, we’ve got your back. My heart and my seat go out to you, my friend!! I may not look fierce on the outside, but if that woman even saw how angry I’m getting right now about her spitting on you… ooh, there’d be trouble.¬†

  • Caramelblond

    You have my sympathies.

    I would recommend that you carry mace or pepper spray if you are going to use mass transit and you get assaulted. Yea, being spit on us an assault. I would have hit or pulled the emergency alarm also and had her arrested.

    • Lia Seth

      Caramelblond – Honestly, in that moment I was more in shock than anything else; I couldn’t even think enough to respond verbally, let alone pull an alarm! Thanks for your sympathies though.

  • Aquariusdragonfly

    wow, that is really unfortunate!  I think people have stereotypes of what disabilities are and look like.  I think sometimes people without a disability, dont give up their seats.  That situation was awkward, and no one knew what to do.  Even if you had no disability, assaulting you was not the answer.  That person probably had a mental health disability!  all you can do is continue to have integrity and hope others will do the same.  Ignorance comes in all shapes and sizes, and even some people with disabilities over step their boundaries.  The best people can do is treat others the way they want to be treated!

    • Lia Seth

      Aquariusdragonfly – You’re absolutely right, and I think the stereotype has to change. There isn’t one single “image” for what a disabled person looks like. They can be old or young, in a wheelchair, carrying a cane, limping, or even seeming to walk and function without any troubles. Raising awareness about invisible disabilities is a great cause, and one I champion, but I definitely agree that the golden rule is a good place to start!

  • Lisa D Walker

    I am so sorry you went through that. I don’t live in a big city, but I also have hypermobility syndrome (HEDS) and understand exactly how you feel. I am almost 50 and since menopause, the pain has been getting worse and not better, as I continue through it. When I was younger, I was very prone to strains, sprains and tears — as I got older, it got a bit better, but over the last few years it’s been increasing again. I have modified some of my activities to some degree to help and have also started taking Cymbalta, which really has helped A LOT. It’s hard with an invisible disability; and we have good days and bad days, which no one else seems to understand unless they have troubles too… seems even at 49 I am ‘too young’ to have all this happening (oh, I think, if they only saw me when I was a kid or a young adult!)…. Here’s to finding the right solution for you, however temporary it may be…. ((gentle hugs))

  • annie

    I had an experience on the LA Metro where I was told repeatedly to use the back door on the bus to get off by a certain bus driver. I had been diagnosed with plantar fascitis (it turned out that I actually have psoriatic arthritis) in my right foot. He yelled at me as I pleaded to just get off in the front since I couldn’t walk very far (I didn’t carry a crutch because I couldn’t afford one) and he refused to open the front of the bus for me. No other driver did this to me ever. I called LA Metro immediately and the operator said this should not have happened. I hope the guy was fired. I hear it is illegal to even question someone as to what their disability is who says that they have a disability – a greyhound driver once told me that. In any case I even told the metro bus driver my foot’s issue, but he refused. I would have been on the bus for another hour if I hadn’t slowly limped to the back door with my school book bag dragging behind me… I was in pain for the rest of the day because I had to walk an extra 45 feet than I usually walked on my daily routine, not to mention, I avoided this bus driver which cost me an extra hour wait for the next bus ūüôĀ

    • Lia Seth

      Annie – That’s horrible. I’m so sorry that happened to you and I hope that your complaint to LA Metro was taken seriously. Cite some ADA on them! Thanks for sharing your story and take care of yourself.

  • annie

    please delete this post – it is a duplicate by mistake – thanks. not sure how to delete myself..

  • Jsongs

    Lia, I too am disabled. Thank you for making me think about the invisibility issue. All people are created equal, but disabilities are not..:) take care.

  • Peggy Fishman

    Hi Lia, I’m so sorry you had someone treat you so despicably. It’s sad that we live in a society that values appearance so much and kindness so little. I know there are MANY kind people in the world, but it often feels unkind. I also have unseen disabilities stemming from a very serious auto accident many years ago. I can have a lot of good days where I almost feel “normal”, but on the bad days I do need to use handicapped parking or restroom stalls or the disabled seating. I have had people stare and yell at me. I respond by telling them, “I hope you never have to go through what I did in order to deserve this (seat, stall, parking spot).”. It is shocking to be mistreated for being disabled. After the first couple of times, I decided it was THEIR problem and I use my standard reply and then ignore them if they continue to be rude. I wish you only kindness and support as you continue your journey.

    • Lia Seth

      Peggy – I really like that response! I’m definitely going to use it in the future, should this come up again (it will.) Thanks so much for sharing.

  • NovemberRain

    Wow, that’s amazing.¬† I’m pretty sure the legal term for what she did was ‘assault,’ and I agree, she should have been arrested for it.¬† That’s the trouble, we so don’t expect it, it’s very hard to respond appropriately.¬†

    I have Ehlers Danlos Syndrome, Hypermobility Type, and I’ve always worked to raise awareness where ever I am about invisible disabilities.¬† Sometimes I wear a wrist support (thumb spica, so not the typical carpal tunnel one, not that people can tell the difference).¬† In the elevator, sometimes people say, ‘carpal tunnel?’ and I give the short speech:¬† ‘No, I have a really annoying genetic condition that makes my joints dislocate at random.’¬† If there’s more time, or it’s a friend, I say more.

    I have always considered myself lucky, and sort of think that in California folks are a bit more educated about this stuff.  Then something like this happens, and I remember none of us is exempt from ignorance. 

    I also believe it’s perfectly acceptable to lie to strangers, in the name of awareness and safety (assault prevention).¬† One could say, ‘I have a heart condition, and cannot stand on the bus, I might faint.’¬†

    I’d like to get small cards printed up with a list of invisible disabilities, and just keep 10 on me everyday to hand to people.¬† Heart disease (multiple sub-categories), Postural Orthostatic Tachycardia Syndrome (POTS) lung disease, arthritis, juvenile arthritis, asthma, Chronic Fatigue Syndrome, epilepsy (which would explain riding the bus as opposed to a car), any kind of cancer, narcolepsy, fibromyalgia, vertigo.¬† Those are what I come up with without even trying.

    And, eventually, your age will catch up (I know, it’s a long time for you) and they will question less.¬† I started with the pain at 28, and am now 51 ~ I get questioned a lot less.¬† But it still happens.

    • Lia Seth

      NovemberRain – I’m glad people are at least showing an interest in your well-being, though I know it can often come across as rude. I also agree that, at times, telling a small lie to strangers is best when it comes to your health – you have to take care of yourself first. I know the age will catch up, but as I’ve said in other comments, this is a case of perception and I wish people understood that there are PLENTY of disabled youth.

  • lilterp

    Hey there,  I can totally relate to what you have started on your discussion thread.  I usually have to sit in disabled seats on BART.  Sometimes, I am not feeling to weak or in pain, and then I will offer to give my seat up.  I have had people give me dirty looks, but had never have someone spit on me.  That is completely unacceptable.  I hope that does not happen to you again.  The other issue I sometimes face especially at rush hour, are the people crowding the disabled seat area.  It is hard for me to get up from seat without the assistance of the side rail.  When people are leaning on it, it is more difficult to navigate out of the seat, and thru the crowd before the doors slam shut.  Anyway, I digress.  Hope that does not happen to you again.

    • Lia Seth

      lilterp – I’ve also had issues with people on BART and MUNI, even when I am sitting, so I can definitely sympathize with your difficulties. Thanks so much for sharing.

  • Dear Lia, so sorry to hear about the MUNI experience.¬†And am¬†deeply sorry to hear about your condition. Prayers <3
    I am dealing with a lot of pain for the last 10 plus years from herniations and spasms resulting from a car accident. And deal with similar treatments from public such as crossing the street or taking a seat. Since it is invisible, people don't think it's real or question you about it almost probing.
    Thank you for sharing this and hope that people educate themselves a little.
    Gaya 

    • Lia Seth

      Gaya – Thanks for sharing. I’m both glad to know that I’m not the only one who experiences the stigma of having an invisible disability as well as disheartened that it keeps happening. I can only hope that this Perspective piece will cause people to think twice before judging.

  • Shakira4u4eva

    i have nerve disorders that have required to me quit school. my nerves are hidden and i feel every day like you. so glad to hear it out by someone like me.

    • Lia Seth

      S4u – That’s awful that you were forced to quit school because of your disability. I hope that you can find someone to help you – doctors, physical therapists, support groups, family, etc – and that you can recover enough to continue your education, if that’s your dream. I’m glad you enjoyed this piece and I hope that you take care of yourself.

  • Sadiya

    It’s so ironical that eyes are a source to see but we have blinded our sights with the prejudices and stereotypes, we choose to see in socially programmed (apt acc to societal norms) way and turn away from the truth just because we are too lazy to see, comprehend, analyse and respond personally.¬†

    I hope that one day every single being possesses thinking, opinions and views different from the other, just like their DNA…

    I pray that you recover from your disability and applaud your courage to transform it as a source of your ability (to write and share about it)

    Love,
    Sadiya

    • Lia Seth

      Sadiya – Thanks so much for your message and your support. I’m doing what I can with my disability and trying to use it as a way to educate people about perceptions and invisible disabilities in general. I’m glad that this perspectives piece resonated with you.

  • anonymousRN

    I just heard your perspective. I CANNOT THANK YOU ENOUGH for taking the time to write and read and post this. Really. I have crippling severe arthritis that is not visible. As a result, I was declared permanently disabled by the federal gov. some 12 years ago. There are time that I can’t even get down the stairs from my current apt. and though I have never been spat on, I have gone through exactly this scenario. Yes – people are remarkably ignorant in the bay area regarding the definition of disabled.¬†

    1 at least defensive tactic, Lia, that has worked for me to temper the ignorance-fueled behavior is that I wear my disabled ID around my neck. I might also note that spitting like that actually could qualify as assault. 

    For those of you reading this who still question and dismiss Ms. Seth, understand that unless you are a medical doctor qualified to determine disability and further, unless you are THIS person’s MD, you are not even close to qualified to begin to make a judgement as to a person’s disability. Your opinions are just that – an opinion – and where physical and, I might add, mental disability are concerned, science is the determining factor; not some opinion from some passerby.¬†

    • Lia Seth

      RN – Thank you so much for your comment. I agree, people tend to think too highly of themselves sometimes and cast what they think they know onto total strangers. Few people in my life fully understand my disability, so I doubt a random MUNI passenger could even come close. I’ve thought about wearing my ID on my neck, but I really don’t like the idea of being “branded” – but maybe I’ll try it and see if the stares and glares taper.

  • Guest

    The best Perspective I’ve ever heard, thank you for opening my eyes–wishing you the best, Lia.

    • Lia Seth

      Thank you so much! That really means a lot to me.

  • Naomi

    Hi Producers, Lia and SLM, A filmmaker in Oakland and I are in the pre-production process for a documentary on Hidden Disabilities! ¬† He personally also has a disability that is invisible to the rest of the world.¬† If you are interested to help in any way, could you contact us?¬† I’m on vacation, but will reply in a week.¬† Thanks!¬† Naomi naomi@tureproductions.com

    • Lia Seth

      Naomi – I would love to help! I’ll contact you via e-mail.

  • Isabelle

    When a close friend of mine was losing her life to Lou Gehrig’s disease, she expressed her sadness less from the disease but more¬†from the lack of kindness in strangers when she was out in public.¬† I, too, experienced that feeling when I had a short lived disability — a broken foot.¬† As I struggled to get through a doorway on my crutches, people would shove to get ahead of the “slow” one, and worst, even let the door slam in my face.¬†

    After hearing your story this morning, I hope your message — and your¬†fascinating blog¬†— will start a movement of more care and¬†compassion about the challenges that¬†disabled individuals¬†face from time to time, and in your case, for a lifetime.

    Wishing you all the best!!!

    • Lia Seth

      Isabelle – Thanks so much for your comment, and I’m so glad that you also enjoy my blog! I was hoping that some of my readers would hear this piece and respond. I’m hopeful that this piece will make people think twice about their own perceptions.

  • Tori

    Thank you so much for this commentary. I am in the same situation – a hidden disability coupled with youth – and, though I am sadden hear what you have gone through, it gives me strength to know I am not alone. Any vehicular travel is very painful for me, but, as I try to make the most of my life and be a productive citizen, I must travel. I am unable to ride MUNI without a disabled seat. On several occasions I have attempted to stand to avoid the attending unpleasantness from my fellow passengers for being a young person in a disable seat, but each time my pain has become so extreme that I am unable to function for the rest of the day. I regularly let crowded buses pass by, even when I have somewhere important to be, rather than struggle to find a seat. I have sustained so many nasty words and so much staring that I dread my twice-daily bus rides. I even get reprimanded when I use handicap push buttons to open doors. I have been yelled at and chastised and talked about. I feel anxious every time the bus pulls up, worried that I won’t be able to find a seat far enough away from the door to avoid being told, with shocking frequency and certainty, “you’re not disabled.” I want to reply with some witty, enlightening remark that will make the people realize how hurtful, rude, and ignorant they have been, but instead I can only manage an embarrassed “actually, I am.” I don’t want to walk around with a shirt that says “hi, I’m disabled” because I’m embarrassed enough as it is that I am only 30 years old with the body of a senior citizen. It is hard enough to have my entire life dictated and affected by my disability without unkindness from strangers. Thank you, Lia, for sharing on behalf of all of us. I admire your strength and wish you well! ¬†

    • Lia Seth

      Tori – You have a really compelling story and I’m so grateful that you chose to share it here. I understand the daily MUNI struggles and anxiety over whether a seat will be open. I know that no one will ever give up their seat to me – not unless I’m in a wheelchair or unless I wait some forty years. I really and truly hope that people begin to give other people the benefit of the doubt and take a stranger’s story at face value. After all, we’re not hurting anyone by taking a seat that we need. If we stay silent, we only end up hurting ourselves. Stay strong, Tori, and thanks again for sharing your story.

    • I too have an invisible malady (explained further up in a comment) and I also wish that I had the perfect witty and eloquent come-back to those who rudely question my status.¬† Meekly and embarassingly saying “I AM disabled” makes me feel weak and like a victim, something I’ve already spent years working through.¬†¬† Hang in there!!

  • Thank you thank you THANK YOU for writing such a well-spoken perspective.¬† I too suffer from an invisible disability–severe chronic pelvic pain–that makes my entire body exhausted and weak, and when I’m in a “pain episode”, it’s difficult to stand up for any amount of time.¬† But I am a young-looking 43 years old, and due to daily yoga, my body looks very healthy.

    I was not spit on while occupying the handicapped seats on MUNI–I am shaking with anger that that happened to you!–but I did have a very ill-tempered older woman loudly complain for my ENTIRE trip from 16th and Potrero to Fillmore and Oak on the 22 Fillmore line, calling me a faker and going on about how I should be arrested, etc.¬† When she initially confronted me to move (and the bus was not anywhere close to being full), I commented succinctly that I was disabled.¬† She rolled her eyes and responded “Oh right.¬† YOU are disabled”, and started her long rant.¬† Chronic pelvic pain isn’t exactly easy to bring up in mixed company; talking about “female troubles” tends to make certain people exceedingly uncomfortable, and I am sensitive to that.¬† Even when I do explain that I have chronic pelvic pain, I get “the look” from some people that my unseen malady can’t possibly be “that bad”.

    Perhaps the worst part of dealing with that woman’s scene-making was watching those around me clearly enjoying the theater. No one came to my defense or asked the woman to quiet down; instead, a number of people simply gawked at me for 15 agonizing minutes.¬† I now have huge amounts of sympathy for those with disabilities that cause ill-mannered people to stare at them.¬†

    Again, Lia, thank you from the bottom of my heart for doing what you did.  You are my new hero!

    • Lia Seth

      Andrea – thanks for sharing your story. I’m sorry for what happened to you on the 22. While I’m glad to know that I’m not the only one who’s been harangued on public transportation with zero support, I wouldn’t wish it on anyone. I’ve had some very nice bus drivers, so perhaps if it comes up again, you could seek their support and assistance. I’ve seen drivers throw unruly passengers off the bus (unrelated to my story) so they do have power in that situation.

      I’m honored to be your hero!! Thanks so much again for sharing and for your kind words.

  • Coconjl

    Lia- thank you for telling your experience, as a person with cerebral palsy i too experiences the stared because i sat down its hard to know i’m disabled. especially as chinese american, respecting the elders is a must, i can read the minds of many muni raiders about me no get up from my disabled seat.

  • Maddy

    Lia, did you go to Scripps? ¬†I’m a junior now and I think you may have been a senior when I was a first year. ¬†In any case I also have an invisibile illness – Dysatuonomia – and I¬†really¬†appreciated this.

    • Lia Seth

      Maddy – Yes I did! I’m so glad you posted a comment here. Feel free to add me as a friend on FB. Scrippsies are an amazing community of women.

  • Mary

    Thank you so much for writing this.¬† My husband is also not visibly disabled (he has total kidney failure) and has experienced job discrimination because of his disability that I don’t think would have happened if he were visibly disabled. ¬†

    • Lia Seth

      Mary – If he’s experiencing job discrimination SOLELY based on his disability (i.e. he’s as capable of doing the work as an able-bodied¬†individual) then he should cite ADA all over them. That’s illegal and definitely not okay.

  • Carolmadey

    Lia, Thank you for taking the time to pen this article. I have MS and sometimes I lead a mostly normal life and sometimes I cannot. When my daughter was five we took her to Disneyworld. I was in the middle of an exacerbation and was relieved to find motor scooters for rent at the park. While sitting on my scooter outside a store in Epcot, a man in his 60’s (I was in my 30’s at the time) looked at me and remarked how terrible it was that I was taking away a resource from someone who might really need it and how lazy could I be not to just walk on my own two legs. Then he walked away. It was crowded so I could not chase him on my scooter. I was battling terrible fatigue and I could not pursue him on foot. I was along with my daughter (my husband was in the shop). If my daughter was with my husband I would have screamed for him to come back. I would have told him how much I HATED being on that stupid scooter. That I would love nothing more than to enjoy the Magic Kingdom using my own legs. I also would have told him that would he like to rent his own scooter, park services had approximately 50 more available so he should just suck it. Instead, I sat there fighting back tears, promising myself that I wasn’t going to let some random A-hole ruin my vacation.¬†

    • Carolmadey – Thanks so much for sharing! I’m so sorry that happened to you, especially at the happiest place in the world. Disney and its employees are usually great about catering to guests with disabilities – the issue almost always comes from other guests. I’ve definitely received stares and glares for sitting in a wheelchair at the park and I wish I had some kind of great comeback I could share with you. Take care of yourself and stay strong – we know that we deserve those seats.

  • JG

    I hope you complained to her in a loud voice! ¬† It sounds as if you didn’t, but if that happens again, say something like, “DON’T SPIT ON ME! THAT WAS RUDE AND DISGUSTING” and say it in a loud voice. ¬†It might even be actionable; next time (I hope there isn’t a next time) consider taking her (or him) to court. ¬† She gave you her germs.

    • Janet – I was honestly too in shock to respond at all. If I had thought for a moment, I would have gone to the bus driver for assistance and backup, but unfortunately I was so taken aback that I just sat still and didn’t say anything.

      • Robyn

        It is so difficult to think coherently when being assaulted. I’m sure you were in shock.

  • Janet

    I think if I were invisibly disabled and such unpleasant comments were made to me regularly, and I’m thinking of all the people who have written in as well as you, I would have little cards made — the size of business cards, which can be prdered very inexpensively — that gave the full name of my disability and listed its symptoms, and said whatever else you wanted to say, e.g., “I am invisibly disabled. ¬†I have xxxxxxxxxx ¬†and it is painful for me to stand. ¬†I am treated regularly with yyyyyyyyyy ¬† but it does not make the illness go away. ¬†I am grateful that public buses have specially designated seats for people like me.” ¬† And I would hand the card to the rude people you and all on this post describe so well.

    • I know this means giving up a lot of private information that I might not be comfortable sharing were I in Lia¬īs permission, but I don¬īt think it¬īs a terrible idea, provided she or other people are comfortable sharing it. I know I¬īve probably assumed someone was able-bodied and made looks their way in similar situations. If someone told me they were not able-bodied, I probably would have believed them at their word without further explaination provided they were not laughing as they said this.

    • But I LOOK Good

      The Invisible Disabilities Association has lots of great pamphlets and flyers that can be passed out. ūüôā

  • lizgunz

    Dear Lia, I could really relate to your perspective. I too am young , I have a mostly invisible disability and I’ve had some very unpleasant experiences confronting a disbelieving public. While I am sure there may be some people who disrespectfully take up disabled seats when they don’t need them, there are many others who take them and need them without looking as if they do. I once even had to argue with a MUNI driver who wouldn’t believe that I had the right to use my discount transit card because I didn’t look like I needed it. I was humiliated and outraged and felt like everyone on the bus was staring at me. Just the other day I had an experience with a coworker at my new job who looked at my car parked in a disabled spot and said loudly, ” I didn’t know you were disabled ! ” I am not exactly sure what he meant by that— but it felt like another version of the ” you must don’t look disabled, so you must be faking it” message. My response to him was ” yep, you didn’t know,” and I left it at that. ¬†But as often as this has happened to me, it still gets to me. I am so sorry that you had the horrible experience that you did, but it was really brave of you to write a perspective piece on it. I heard it this morning and by this evening I had several voice mails from friends asking me if I’d heard your piece because they knew how much I could relate.¬†

    Keep being a brave voice and stay strong!

    • lizgunz – I’m so glad you chose to comment; thanks for sharing your story! I really do wish I had a great comeback for all the ignorant comments and questions we tend to receive, but I have yet to think of one that encompasses all the feelings that go along with what we have. Also, I’m touched that your friends shared my piece with you even though you found it on your own. Thanks again for writing.

  • Monica

    Lia, my heart goes out to you as I am also hypermobile (Ehlers-Danlos Syndrome). My disability is no longer invisible but I totally know where you are coming from. I currently have a mobility service dog to help with balance and that brings its own problems as well. People scream and actually run away, I’ve had people throw food and objects at him, and also just the well meaning but uneducated people who want to cuddle him. I have yet to be denied access to a place because of him but some places only grudgingly provide service. I wish you only the best and send hugs and calming vibes to you.

    • Monica – Thank you so much for sharing. I wasn’t aware that service dogs were able to help with mobility, but I guess it does make sense. Maybe that’s something I’ll look into eventually! I can only hope that this piece makes people think twice about the way they look at strangers.

  • Ann Schult

    Your employer must know you have limitations. It seems you must have good days and bad days. Where a sign on the bus or take access-a-ride.

  • Kristina

    Lisa, I am so sorry that you had to go through an experience like that. I also suffer from a hypermobility disorder (Ehlers Danlos Syndrome), and for years I struggled taking the bus to campus. Even now that I have to use a cane to provide some stability for my knees and feet dislocating I still have difficulties getting a seat on the bus. The pain of standing on crowded buses because nobody will give up a seat got so bad that I have now started to take the Handydart service in my city too and from school, which has now caused even more comments from people that can’t understand that young people can be disabled without really looking sick.

  • Heather Gehlert

    Hi Lia, thank you so much for sharing your story. I, too, have a hypermobility disorder called Ehlers-Danlos Syndrome and struggle with the same challenges on public transit (though no one has ever spat on me). I feel anxious every time I have to sit in the disabled seats on BART or use my parking placard. I was diagnosed at age 22 and am now 30 but still get lots of sideways glances. Even on days when I have to use a cane, I get the impression that, because of my youth, people don’t quite buy it. I love Janet’s suggestion of carrying cards. And I’ve also started telling people “I have Ehlers-Danlos Syndrome” instead of saying “I’m disabled,” and that seems to help a little. I think it signals to people that there’s a knowledge gap and they don’t actually know what I’m going through. It’s harder to dispute a clinical diagnosis. I’ve also found that using the name makes some people curious and gives me a teachable moment to explain what’s wrong. It’s comforting to hear someone else’s story and know that I am not alone. Take good care and best of luck to you!

    • Heather – that’s a really good point. I imagine that referring to it as Ehlers-Danlos Syndrome would make more people believe us. I’m definitely going to try that in the future! Thanks so much for writing in and sharing.

      • EDSadvocate

        I agree, referring to the condition, often stops people in their tracks. With Ehlers-Danlos Syndrome just hearing the name with very little explanation serves to make people familiar with that name and some will even look for more information if they hear it enough times.

  • Beverly

    Thank you, Lia, so much for your very articulate description of what it is like to be out there with a hidden physical problem.  I have wanted to write something just like this.  I am so glad you found the words and courage to do it for so many others like you.

  • Lia, I am doing my dissertation on non-apparent disabilities at Mills College.¬† I would love to share some of your story in the readers theatre production I am doing in conjunction with my research.¬† Let’s talk! You can reach me @millerjess@mills.edu Somehow I didn’t get my name up above but let me know your thoughts!

    • I’d be more than happy to help! Let me know the best way to get in touch with you.

    • Jess – I’d definitely be interested in helping you out! I’ll shoot you and e-mail directly.

  • Nicole

    Hi Lia — the Ehlers Danlos National Foundation makes wallet cards. While they’re for emergencies, they may be useful in situations like these. Also, I think Ehlers Danlos hypermobility is present from birth. Most of us get diagnosed when it becomes disabling (for me, this year).

  • Stephane

    I find Lia’s experience unacceptable on many levels. What bothers me most is the public’s inability to “Listen” and also their unwillingness to “step in” when a wrong is being committed. Lia’s answer should have been enough for the person asking the question. The fact that nobody reacted when she was spat on was regretful and reflects poorly on our society. Why are we all afraid to say something in public?
    Finally from reading this article, I would reason perhaps incorrectly that Assault (Someone getting in Lia’s face and making her uncomfortable) and Battery (spitting) was committed. Lia, I hope this doesn’t ever happen again to you, but should it, please be aware that technically, you could probably have asked the driver to stop the bus and not let the person off until a police unit arrived. Yes, some people may have been put off, but they are not important, principle is.
    Most respectfully,
    Stephane.

  • EDSadvocate

    Bravo, Lia, for speaking up. I was on BART this past Friday and had to ask a teenager to give up a seat for me. His mother questioned me and I was horrified to realize the silence around us as others waited for my reaction. It dawned on me that I had my DMV disable parking tag in my purse so I held it up and loudly announced that I have Ehlers-Danlos Syndrome which makes my hypermobile joints dislocate easily so it would be safer for everyone if I was seated on the train. Everyone relaxed and ignored me from then on out to my destination. It isn’t fair that those with an invisible disability have to rely upon props like a DMV tag or a cane to get others to believe them. I hope our paths cross in the future, I’d love to meet you and compare hypermobility notes.

    • Lia Seth

      EDSadvocate – I’ve never had the courage to ask someone for a seat, but I’ve definitely pulled out my parking tag to “prove” my disability on a bus. It’s unfortunate that I have to do so, but a recognizable “prop” like that does tend to assuage people and instill a sense of familiarity. I too would welcome the opportunity to meet and compare notes!

  • DocB

    I have a similar situation to the author. I am also disabled (neurological condition, extreme dizziness all the time) but I look fine. Even tho I don’t usually need it I use a cane when I go into public. It immediately changes how people interact with me, especially when and if I have to sit instead of stand.

  • LD

    It’s not just San Fran that needs education. I admit I went through a phase when I was younger where I also assumed young=able-bodied. However it didn’t take long or much education for me to realize that is not the case. There are so many disabilities that cannot be seen. I seem to always be the only one to offer my seat to someone with a disability, a pregnant woman or an elder who could use the seat. It’s shameful. Anyone who rides public transportation should be educated. Perhaps some good permanent signs near all of the blue seats.

    • Lia Seth

      LD – I admit that I have been guilty of that assumption as well, even after my diagnosis! It won’t be easy to change perception, but I think writing to MUNI (and other public transportation offices) requesting that they post information about invisible disabilities near the blue seats is a good way to start.

  • SB

    Thank you for speaking up. I have Crohn’s Disease, and while I have never been spat on, I have certainly had to deal with some unpleasant situations. A few weeks ago, I had to take two buses and the metro system to get home after an exhausting medical treatment. I had four different bandages that screamed “just came from the hospital,” including one that covered my entire inner elbow, a hospital bracelet, and I looked very tired after my treatment. On the one bus, other people who were standing would rush to open seats before I could get them, and only after 10 minutes of almost falling over from lack of balance and exhaustion did a man offer me his seat. On the metro, I was standing again, and one other lady (who was standing) started to confront two ladies sitting in the disabled seating to ask if I could sit down, as she could see that I had bandages, a hospital bracelet, and was clearly exhausted. They did not pay attention to her. Another woman got up and offered me her seat after those ladies ignored the woman who came to my aid, and she offered me her seat. I was fortunate enough to get a seat on the last bus.
    Lately, having an invisible disability has been incredibly difficult. I always feel the need to apologize when my condition gets in the way, because it seems as if nobody understands my condition even if I explain it. Professors, neighbors, friends, I always feel like I am inconveniencing them. Nobody should be allowed to make me feel that way. I think that, for some people, it is impossible to comprehend how someone “doesn’t look sick” (I HATE those words) yet can be in as much discomfort as somebody with a disability that manifests itself in visible ways. Thank you for sharing your story, and I hope you know that there is an entire network of people out there who support and understand you.

    • Lia Seth

      SB – Thanks so much for sharing your story. That’s horrible that you had to go through that experience multiple times in one day – especially on a day when you were feeling so exhausted! The only time someone has ever given up a seat for me is when I dislocated my knee while standing up to give someone ELSE my seat. It’s awful that people don’t believe us. I hope you take care of yourself and that people begin understanding that they don’t know everything about disabilities.

  • Reading this makes me very sad. I am the mother of a 7 year old with mild Cerebral Palsy, and you would never know he was disable just by looking at him. One time I sat my son on the front seat of the bus and this lady confronted me about it, I was so upset that i pulled up his pants to show her his braces and the only thing she did was look away. Unfortunately this is a reality, and I do hope one day it get’s better. I feel your pain!

  • flarick

    First, by spitting on you the woman can be charged with assault and in most jurisdictions is liable for a charge of consumating an assault with a battery. In my opinion, you should have filed charges, as that is one way to ensure people act more civilly toward everyone.
    Her behavior was first and foremost and uncivil as well as the aforementioned potential criminal liability.
    To the larger issue, I understand and sympathize with your plight, however, unless you are prepared to share your affliction with strangers and to take actions like filing charges when appropriate, then people cannot make allowances for what they don’t know exists.
    As an able-bodied person it angers me when those who are not disabled take advantage of parking places, seating, etc. that are reserved for those of us who face certain challenges. So, I very likely would have said something to you and perhaps complained to the bus driver. However, I would not have assaulted you and if time permitted heard your story out, which makes the case another commenter made for a business card sized explanation to pass out.

    • Robyn

      You would have complained? As if you had any right to demand an explanation.

    • Lia Seth

      flarick – I have no issue with people asking me about my disability if they see me putting up a tag in my car or even if they see me struggling to walk, as I sometimes do.

      However, I think the only time it’s okay to question someone sitting in those seats is if you or someone else needs to sit and there are no other available seats. Then, the only okay thing to say is “excuse me, would you mind giving your seat up? I’m disabled.” However, when I respond “I’m sorry, but I’m disabled too, so I need this seat,” I would hope that no one would “complain” to a bus driver that someone who doesn’t look like they need a seat is taking one.

      That’s the whole point of this Perspective – that there are invisible disabilities too, and that I shouldn’t have to defend myself to anyone past that one simple sentence. I absolutely think that people can make allowances for what they don’t know exists.

      • Heather Gehlert

        Lia — I couldn’t agree more! I tried posting this reply a few days ago, but it looks like I made a mistake and it didn’t go through, so I’m trying again. Any medical information you volunteer is one thing, but people should not feel they have the right to demand specifics, as though they are an authority you have to answer to. Although I do often tell people I have EDS, I think that is a very individual decision and something that no one should feel obligated to divulge. And, as Sammie mentioned, some people who think they are helping by confronting those who “look” able-bodied often do more harm than good to the very people they say they wish to protect. Seeing how much awareness you’ve raised by telling your story continues to encourage me in my own struggle and, for the first time, I feel connected to a community because of the comment thread your story has inspired. A huge thank you, and I hope that the process of sharing your perspective has been helpful for you too! I also want to say to you or to anyone else in the Bay Area who struggles with EDS or another invisible condition (I have ulcerative colitis too!) that if anyone is interested in a meet-and-greet or maybe even just staying connected with a local Facebook group page, I am all for it. If not, no problem, but if there’s any support I can offer, just say the word!

  • Robyn

    I am so sorry tjat some people are so hateful and others tolerate it. My disease is also invisible. Thank you for speaking out.

    • Robyn

      I am also a Scripps alumna.:-)

  • Elisa

    Lia, I don’t think we’ve ever officially met but I’ve heard so many wonderful things about you (I have a few friends who go to the 5Cs). It’s incredible that you spoke up, because frankly, there are people who simply don’t know. Society has always had this affect on us that the only disabled people are ones in cruches, a wheelchair, or with a cane; even I have to think twice about it. I always try to think the best in people when they sit in the blue seats, when they don’t “look” disabled, and I just hope that they are there because they really need to be. I cannot believe that someone actually was that rude to you, I wish I could have been there to defend you. Thank you for this wonderful perspective!

    • Lia Seth

      Elisa – thank you so much for writing! I’m glad that you are conscious of the issue and force yourself to think twice. I can only hope that more people begin to react the same way as you!

  • Allison

    I have no doubt that you have made a significant difference by speaking out. I hope that, when you are hurting, you will remember that your perspective has helped people who face similar challenges, as well as those who were previously ignorant; and changed the way people will interact in the future. The ripple effect is heartening to contemplate.

    I have one question. What is the matter with people that a simple request from another human being indicating they would like to sit down should be met with any response other than immediately offering their seat or regretfully explaining that they themselves need the seat? Why in the world would one demand an explanation?!? I’m really flabbergasted by this.

  • Allison

    I think what I meant to say Lia, is don’t feel guilty. You should be proud.

    • Lia Seth

      Allison – thank you for both of your comments. I try to understand why people feel they have the right to demand explanations from me. If it a friend told you they were disabled, even though you couldn’t tell, wouldn’t you believe them and want to defend and support them? Why should it be any different for strangers? I wish people could give others the benefit of the doubt sometimes. Thanks again for writing.

  • sammie

    Lia, I will never forget visiting Muir Woods (the tourist attraction portion) with my partner and her brother who was in from out of town . At the time she was living with metastatic breast cancer and it had spread to her liver, brain and bones. She had been on a variety of chemotherapy regimins and clinical trials for three years straight. We elected to use one of wheelchairs they so generously provide at the gate. At the time she was 36 years old, and because of her advanced disease, the chemotherapy regimin that she was on was palliative and with this particular drug, it did not cause her to lose her hair (quick public service announcement: people with cancer, who will die from their disease, often look no different from you or I, even though their lived experience is very, very, very different). After returning from the tour, she stood up from her wheelchair and an angry old man, 15 feet away, shot us a look of utter disgust and repeatedly slapped his thighs aggressively with his hands and pointed towards the wheelchair. The rage I felt paralyzed me, and while I was probably spared from a stint in jail from the assault I would have wailed on him had I not been so stunned, I still regret not having gone up to him and telling him exactly what I thought of him. What’s most sad– is that these people feel so righteous in their acts to defend those in our society that are the most vulnerable. Little do they know that their cruel acts of vigilante justice are hurting the very people they purport to protect: those with disabilities (and their loved ones). I can say from personal experience that that hurts much more than some able-bodied loser sitting inappropriately in a spot on a bus reserved for the disabled, or an entitled, clueless driver taking a disability parking spot.

    • Lia Seth

      sammie – thanks for sharing your story. That man’s actions were disgusting, ignorant, and uncalled for and I’m so sorry that he caused you such anger. I feel angry just hearing about it, so I can only imagine your reaction! We don’t always have the opportunity to educate strangers about invisible disabilities and other conditions, so unfortunately this is something that may keep happening. We can only do so much and I hope that if you ever come across a similar situation, you can find the strength to stand up for people like me and your partner.

  • hi-endian

    I heard your piece on the radio last week; and I’m only geting around to commenting now. I’m saddened and appalled at the experience yo went through. While people’s misunderstanding of your situation is unfortunate, yet sadly understandable, there is no time when spitting in your face is even close to being acceptable. I’m so sorry that you’ve encountered such grossly inappropriate behavior.

  • But I LOOK Good

    Share your story with the Invisible Disabilities Association! They have a video project called, Invisible No More! http://www.InvisibleNoMore.tv

  • creekside408

    I have a friend who rides MUNI who has a severe neurological disorder. She has also been attacked — verbally and physically — for using a handicapped seat.

  • Sherri

    I like the idea of cards. I think the name of the disability, a few major symptoms and a website explaining it could be a useful tactic. It would provide information in a manageable format.
    Fortunately, my disability effect (MS) is mostly fatigue. There are many others that are considerably worse, and I hope that treatments can be found. Best of luck.

  • Evelyn Duerr Ryan

    I deal with the same thing. I work in a building that is primarily medical personnel and they even have made comments about my use of a handicapped parking space when I am obviously not handicapped. If trained medical personnel can be this ignorant, how can we expect the general public to understand??

    In my defense, I have taken to using my cane at all times, even those days I don’t need it. It’s a visible clue to the ignorant. And on many days, I may not need it in the beginning, but by the end I do. And it’s a great weapon too. (I even have a folding one that I can carry when I just want to have it around in case of emergencies.)

  • dragonet2

    Even if you have a visible disability, some people are wound up to give you a piece of their mind if they think you don’t deserve to use whatever. I lost my left foot to a staph infection in May and did not get to get a prosthetic until September due to a minor but annoying wound issue.

    I was waiting in the vestibule of a grocery store for my husband to drive up to the door, still sitting in the motorized scooter I had used. walker folded up in the basket. A much older lady saw me, got an angry look on her face and strode up to me, hand in front of her ready to do the ‘scold-finger.’ Then actually looked at me. Sitting there one-legged, waiting for my husband.

    She stomped off as if disappointed she didn’t get to scold a ‘young-un’ about something. I wished her a nice day as she departed.

  • marion06095

    I have MS, and quite a few years ago (when I didn’t “look disabled”) I was parking in a handicap parking spot. A lady came over to me and said, “You don’t look very disabled to me.” I looked her straight in the eye, and simply stated “That’s because you are an idiot”, and went on my way. She just stood there looking like … well, an idiot.

  • jojo

    i’m also an EDSer (hypermobility type) and I also live in SF…I feel like there are more than a couple of us in the city, of which I had NO idea…maybe we can all meet, have an SF support group? I too have had SERIOUS issues on the bus, I’ve almost been assaulted because of it. And I usually walk with a cain…

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