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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 Gail on
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Maybe you can look into custom lace fronts. She can wash them on her hear, when she comes home she can send it back to the company and switch out for a newer one. I wish her luck. Tell her to keep her head up. I know how she feels. I wish I could speak to you.
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Permalink Reply by Joanne Thomas on
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I suggest that you look here.
http://www.higheredcompliance.org/resources/disabilities-accommodat...
Best wishes to you and your daughter. :)
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I have been informed that alopecia is not classified as a listed disability. If you have something that says it does, please share.
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While Alopecia is not, generally people arent requesting the accommodation for that reason but rather the anxiety of living with others of which the CAUSE is alopecia. Anxiety is a recognized disability. So you need to look at what you are requesting and why and get the documentation to back that up.
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Excellent post, Tsunami9967!
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Thank you!
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Permalink Reply by Matt (Mikayla's Dad) on
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My eldest daughter has Alopecia Universalis. She just completed her first year in college and is back home for the summer. She started losing her hair in the 6th grade, and was wearing a wig by the 7th. All through Junior High and High School, only her closest friends knew about her hair loss...she was so afraid that people would find out and make fun of her, or make a big deal out of it.
Last summer, before college, she made the decision to just tell people up front. She finally decided that if people didn't like her how she was, she didn't need them as friends anyway. Same as Lauren, during orientation for the "ice breaker," she just smiled and said, "I have Alopecia Universalis and I wear a wig!" Most of the comments were like, no you don't, that has to be your real hair, and stuff like that. She got the opportunity to explain what it is, and make everyone aware. She even decided to write a speech about it for her public speaking class, in which she included pictures of herself with no wig as part of the presentation!
She explained to my wife and I that she has never felt more free, and more comfortable about being herself than she does now. She has said time and time again how incredible it feels to not be "hiding" her hair loss anymore. She has tons of friends and enjoys every day without a second thought. In fact, when people comment on how pretty her hair is, she now says "Thanks...it's a wig,". Then she explains of course. :-).
I know everybody deals with this in his or her own way, but there's definitely hope. College is a brand new start in life...I hope she can make the best of it.
If your daughter would like to talk to Mikayla, I'd be happy to give you her email or number to text. She'd love the opportunity to tell her story and maybe offer some encouragement. :-)
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Technically, we may see AA, UA, UT as a disability, but it's not a disability in that it doesn't keep us from doing things and we don't need special equipment for mobility, vision, etc. I've had AA since I was ten, and I'm 53 now. I had to learn how to negotiate the landmine that's adolescence and high school, plus I went away to college and lived in the dorm for two years (mandatory as a Freshman). I had roommates both in the dorms and moved off campus with roommates and none of them knew about my condition (or if they did, they never said anything about it). My roommates from college and I have been like family for 33 years, and they STILL do not know - the only person who knew outside of my parents was my late husband. I went to college wearing wigs back in the 80's when there was no such thing as lace front or full lace wigs for every day wear.
My freshman year bathroom was a semi-private which meant there were two bathrooms in a suite of four women. What I did was wear a shower cap and if I needed to wash my wig, I washed it on my head just as if it was attached to my head (which it was in effect; I wasn't shaving my head, so I would bobby pin the wig to what little hair I had, and made sure to hide the pins). I wrapped my head in a towel just like everybody else or took off the shower cap, put on my robe, and walked back into my room just like anybody else. Again, synthetic wig, no lace front, with adjustable straps and bobby pins standing between me and possible humiliation. Plus I was a Theater major, which meant I had to be able to set and style my hair on my own for whatever role myself if I wanted to keep my secret as well. And I did it. Whenever I needed to replace my unit, I went to wig stores far enough from campus where I knew I wouldn't run into anybody I knew. I took the wig off at the shop, put the new wig on there, and went back to campus. I "went to the salon" just like everybody else. ;)
The fact that I was able to get through college without any type of special consideration for ADA -which didn't exist back in the 80's - means that your daughter can do it as well. Of course, having dealt with AA since I was ten meant that I had been dealing with it a few years earlier than your daughter had when she was dx'd in 8th grade, but she's still had time to adjust and deal with this. Hell, I had a gym teacher tell me the same thing in 8th grade when I got caught up in my shirt somehow trying to change for class, and she basically told me to suck it up and deal with it. Harsh? Yup. But I did and survived. Your daughter will too. This is something she's going to have to learn to deal with and navigate through until they find a cure or for the rest of her life. So "suck it up, and deal with it!". We don't have a disability in that this really doesn't prevent us from doing things like loosing our sight or a limb would. She'll be fine, and proud of herself when she figures out how to not let this define her or inhibit her.
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Permalink Reply by Zimrie on
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Dollhead wrote, "What I did was wear a shower cap and if I needed to wash my wig, I washed it on my head just as if it was attached to my head (which it was in effect; I wasn't shaving my head, so I would bobby pin the wig to what little hair I had, and made sure to hide the pins). I wrapped my head in a towel just like everybody else..."
I'm not trying to tell you what to do but If this was me, I would just take the hairpiece off to wash it and not apologize. What you were doing sounds really uncomfortable and could easily drive someone insane. I have numerous different wigs and head covers so if one is getting washed, I have another one to wear. I tell people the truth about my hair and sometimes deal with their insensitivity. I have heard of hairpieces getting stolen and hope this does not happen to anyone here. I hate being treated as a public pathology and I can't blame anyone for not wanting to be seen in terms of their illness on a college campus.
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It really wasn't all that different than washing my biological hair, and actually it was easier. I didn't wash it through the shower cap. If I knew I had to wash my wig, I'd wash it on my head just like it was growing out of my scalp. If I wasn't going to wash it, I wore the shower cap on top of the wig. The goal was to keep my business my own, and appear as "normal" as possible. One thing to always keep in mind is that there are always people who search out weaknesses, and if anybody knew I wore a wig, I set myself up for having it taken, snatched off my head, etc. I wouldn't willingly give someone who didn't know me ammunition that could be used against me. Washing it on my head also did away with anything "telltale" about my situation like wig stands, etc., and helped to keep the wig blocked and keep its shape.
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Permalink Reply by kastababy on
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I'm sorry to hear that you're going through this. Unfortunately, the Student Services Coordinator is correct in this instance. Colleges and universities are only required to make reasonable accommodations in housing with regard to physical and life-threatening medical conditions, such as diabetes. Requesting a private bathroom because your daughter does not want to use a common bathroom on account of her alopecia doesn't fall into that category.
I get it. Not too many years ago, I was that freshman moving into a dormitory on a big college campus, and was a little hesitant because my mother was forcing me to wear a wig to school still. The solution I devised for myself was to speak to the resident advisor (RA) that lived on my floor with the head resident and explained the situation. They were more than willing to let me know when the showers and bathroom were least likely to be occupied and gave me the option of bathing and such at those times. In the end, I chose NOT to take those options and just be myself, and never once did I have a problem with ANYONE in the dorms (for the record, I was a 16-year-old freshman.)
Like it or not, this is just the first of many situations throughout the rest of your daughter's life where a choice will have to be made: Is it more important to experience the independence of college life away from the safe cocoon that is home, or is it more important to keep your head covered and allow alopecia to dictate and control your quality of life? That is a choice your daughter will have to make over and over again for the rest of her life. If she makes the decision that being able to hide from everyone is more important, then perhaps a school closer to home where she could live at home and be guaranteed that privacy is a better option. Think of it, if you will, as a test of social maturity, because now that you've made it an issue, that's how the school is looking at it. If your daughter isn't mature enough to handle community living in a dormitory, how is she going to handle Greek life, the party scene, and other regular interactions with the whole school? (Please understand, this isn't assuming that your daughter is immature, but that's how the school will see it.) Also, please try to see this from the school's perspective. We live in a time where EVERYONE wears weaves, wigs, and extensions on and in their heads. Realistically speaking, if the school makes an accommodation for your daughter, they would have to make accommodations for EVERY OTHER female that wears wigs, weaves, or extensions, and believe you me, there simply aren't enough private bathrooms on ANY college campus to go around.
I'm actually rather grateful that I wasn't given an accommodation all those years ago. Being forced to make the choice to be independent or comfortable prepared me for all the other major and minor injustices I've encountered as an adult, and I've become stronger and more self-confident as a result.
I hope things work out for you. I wish you and your daughter the best of luck!
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