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Problems with college dorm not willing to make accommodation for daughter w/ alopecia universalis
My daughter is 18 years old and about to be a freshman in college. She has Alopecia Universalis which she was diagnosed with in 8th grade. She desires to go away to college and try to spread her wings a little bit. At the college she wants to go to, it is required for freshmen to live in the residence halls (dorms). She has been very hesitant to go off to college due to the simple fact that she is so worried about privacy issues with the rooms and bathrooms.
She is emotionally not at the point where she is comfortable with anyone seeing her without her wig on. The college only has one residence hall that offers private and semiprivate rooms/bathrooms. The rest of the residence halls have large community bathrooms.
I called the Student Access Office to talk about my daughter filing a request for housing accommodation due to her medical condition. The lady I spoke with was very cold, dismissive and not compassionate. She said the Access Office is only responsible for removing barriers to access for students with disabilities and my daughter’s condition did not meet this criteria and they did not need to make an accommodation just to make her feel more comfortable.
Does anyone know of any recourse, or supporting documentation I can submit about what an emotional toll Alopecia can have on those afflicted with it? I appreciate your time and any assistance any of you can give me.
Replies to This Discussion
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Permalink Reply by Georgia Kay Jarman on
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I AGREE THAT YOU HAVE TO BECOME STRONG AND ACCEPTING AS HANNAH SAID ABOVE.
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I was happy to read your response. I agree that alopecia is only a disability if you make it one. If hiding alopecia is taking over someone's life and making them feel they can't do things they otherwise would, then maybe it is time to stop hiding.
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I have felt this way since around 1970. I have tried to stop hiding but can't. Having this website has afforded me the ability to speak about it for the first time.
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Hannah, I am glad that you are able to handle your AU so well. However, Alopecia Universalis is not an "uncomfortable cosmetic condition". It is an autoimmune disease which causes hair loss. One of the worst things people with alopecia have to endure is someone who finds out about their AU and casually remarks, "Oh well, at least it's not life-threatening." It makes us feel as though our problem and our feelings are being dismissed. So often, the people who make these uncaring remarks are the same ones who can't leave the house if they are having even a remotely bad-hair day! Also, I doubt there are too many people with AU who get up in the morning and decide, "I think today I will make my alopecia a hindrance." Most people with AU do the best that they can and don't need lectures about how they should think or feel about their autoimmune disease.
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Thank you Sabine!
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When people remark that "at least it's not life threatening" it isn't a dismissal of your feelings. It's because they see you, assume you have cancer that might kill you, and then are trying to find the bright side when you correct them.
It's unfortunate, but it's a blessing when compared with debilitating illnesses some people have to live with. The effects of this desase ARE largely cosmetic.
The only person responsible for your feelings is you.
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Yes, Tanya, I agree that they are probably trying to make you feel better. Then again, I sometimes get the impression that they are trying to make themselves feel better. Unfortunately, society is very quick to judge people by their appearance, so alopecia can lead to a lot of discrimination, both socially and professionally. Insurance companies will pay for wigs for people with cancer. They usually do not pay for wigs for people with alopecia areata. Frankly, I cannot understand how they will pay for wigs for hair loss for one disease and not for another. Hair loss for people with cancer is temporary. For those with alopecia, it is sometimes permanent or very long-term (decades). I disagree that we are responsible for our own feelings. Feelings are instinctive, not a choice. All we can be responsible for is our behavior.
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Your insurance may pay for your wig if a physician prescribes it as a prosthetic, but may not cover you every time you want a new hairdo.
You may not be able to control how you feel in the moment, but you have a choice when it comes to processing your feelings. If you resign yourself to being the victim of this condition and demand that strangers acknowledge your pain and somehow instinctively know the right thing to say to you in a way that doesn't hurt your personal feelings, you're not going to be pleased. Holding other people accountable for your feelings is not a responsible way to act.
Judging people by their appearance is a "feeling" too. It comes from evolutionary instincts. A species survives through selective breeding, and if you look abnormal or diseased, you would be quickly removed from the gene pool. Healthy hair and skin are signs of a healthy mate, and there's a natural feeling of aversion that happens when you see a person displaying qualities of disease or inadequacy. Society is actually working against this instinct, rather than enforcing judgement. (Yes, some people are assholes, but for the most part, people are very accepting of each other.)
If you want other people to be considerate of your feelings, you have to be considerate of theirs too. Even if their feelings and your feelings are not compatible. If they're trying to make themselves feel better, they feel for you in the first place, which shows empathy. That's nothing to scoff at.
Be the change you want to see in the world. If you don't want them to be critical of you, you shouldn't be too critical of them if their intentions are good. Nobody taught them what to say to you specifically, or how you'd feel about it, and they're trying to do their best to put themselves in your shoes and figure out how they'd feel in your place.
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Sorry, Tanya, but I find your comment about insurance not covering a wig every time we want a new hairdo a tad snarky. Most people simply want to look normal. I find nothing wrong with that. Yes, I am a victim of AU whether I or you like it or not. However, that does not make me a victim as a person in general. I have always tried to be considerate of other people's feelings, and I think that not minimizing their situation is a good way of doing that. Yes, there are people out there far worse than those with AU and people out there far better than those with AU. In the final analysis, it really doesn't matter. Things are what they are (not worse and/or not better) and our particular situation is the one with which we have to deal.
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Hi Danna,
To echo others, so sorry you're going through this. I empathize deeply with your daughter--teenagerhood and moving away from home is hard enough without dealing with AU! (I also deeply empathize with her mom! Having your daughter move out of your home and go to college is way beyond rough enough without watching her suffering through trying to navigate her AU!)
I agree with the sentiments of others, as well. Lauren's story is very inspiring (and it speaks to my dorm experiences as well--very welcoming!) and if the college is unwilling to accommodate (which is absolutely preposterous), then your daughter can take a similar tactic, but she should hardly be forced into doing something she's not ready for.
My advice is to NOT give up on the school because you spoke with one awful bureaucrat. Hopefully you got her name, if not, call that office back and make note of it if you have to deal with her again. Reach out to the school from different angles, if you can. Firstly, if the school is nearby, I suggest you go speak to them in person--it's much more difficult to be uncaring directly to someone's face. Bring a doctor's note with you for sure. Secondly, as Rapunzel said, speak to that person's supervisor. If this gets you nowhere, reach out to other departments. Definitely speak with the Director of Student housing, visit the Office of Student Life, the Dean of Students, the Counseling Center--anyone who will listen and join your crusade. People in these offices are (or should be) there because they genuinely and deeply care about college students and the college experience on their campus. You'd be amazed at what once-inflexible departmental bureaucrats can do when someone like the Dean of Students gets involved. Poor Betty Bureaucrat you spoke to probably deals with entitled parents all day long who are trying to get the school to make "exceptions" for their children for any number of asinine reasons. Her knee-jerk reaction may be to be dismissive, but if you are persistent, I find it hard to believe they won't make a "reasonable accommodation." With what little awareness people have of AU, I wouldn't be surprised if she thinks you're just another picky parent.
Fight for your daughter. Maybe don't fill her in on what you're doing exactly (oh, the mortification!), but it's a parents' prerogative to advocate for her child. Get a doctor to describe the condition and the emotional toll it takes--a good doctor will also have your daughters' emotional wellbeing at heart.
And finally, if all else fails and your daughter must share a bathroom with other girls, hopefully she can take Lauren's approach and find herself liberated in a community of young women who all want the best for each other. Maybe one day she will be hosting an "Alopecia Awareness" party á la Happythankyoumoreplease (a great Sundance film, that your daughter must see if she hasn't already). At some point in her life she'll look back on this and wonder "why was I ever so worried?" but as all women know, that moment might not be for a very long time.
Good luck to you both. She's lucky to have such an awesome mom in her corner and a great role model!
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Hello everyone!
I was diagnosed with alopecia unversalis when i was 20, just when i started my MD. I went away for school and had to live in a dorm too. At firs it was hard with the wig and everything... My alopecia lasted for about 6 years and then i got my hair back, for ten years... About a year ago i started to loose my hair again, two weeks ago i started to use a wig. Now I look back and think that when i was young I thought that my hair was everything and that everybody cared about it, turns out it wasn't like that at all, but it is a strength you gain only with time nonetheless....It never gets easier to go and get a new wig, or to go out with it feeling that everybody notices it... never. Somehow i think that just when you become used to not having your hair anymore... its starts to grow back again...
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Permalink Reply by Jcortez05 on
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I do not know what it's like to go through that but I do know what it's like to go from a full head of hair to Loosing it all just because I gave birth to my son and having to live like that with his father .. I was completely insecure I tried to get him out of the house I picked any fight so he would want to move out all because of my insecurities ..it didn't work he. My point is , if someone wants to know you, love you, leave you, etc they will do it being 100%. you
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