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.

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I'm so sorry to hear this!  My daughter will be a junior in high school next year and we are starting to look at colleges.  Perhaps we should be asking about this as we look at schools.  She was diagnosed in 7th grade. No easy road for our sweet girls....  Feeling your pain... Melissa

My daughter's pediatrician wrote a prescription for a private room. We elected not to use it but she wrote it at her college physical. I believe your college would / should honor that.
I would call the local news channel and an attorney to let the world know that it's only $ they care about

But that's the very thing her daughter is trying to avoid. Public attention and the spotlight being shown on her.  Why would she do that if privacy is what she's looking for for her daughter???

no no no. Maybe the news station, but certainly not an attorney. Why is everyone so sue happy when they don't get their way? Big problem with society today.

Get medical documentation, either from a doctor or psychologist. Documentation should recommend home environment as being safer to live in during freshma year. If your child has depression or anxiety, this may be helpful. ADA requirement (access office) applies to "reasonable accommodations" for any policy . . . Not just access issues. The college would need to state why it is not a reasonable accommodation.

Every female that wore extensions or wigs could claim they needed special accommodations because they wore them. They could very easily argue this.

Almost identical life story ... Lost hair in eighth grade, had a single room in college - had to fight for it .there should be a center for students with disabilities- obviously it's not a disability but I had to go through the that avenue to get accommodation .

I would try to get a letter from your doctor; it carries more weight with schools.

On a slight side note though, I went through almost exactly what your daughter did - diagnosed in 8th grade, wound up with AU, terrified to go to college.  I was super afraid of being judged by everyone on my hall but really wanted to live away from home.  I finally got to the point where I decided that if college was going to be my new home, I was going to make it as comfortable as possible.   During orientation when we did the introduction icebreaker, I introduced myself and said I have alopecia so I wear wigs and that it's not contagious, and I warned everyone not to be surprised if they saw me without my hair.  I was so afraid to do it that I was shaking while talking and missed everyone else's name, but no one made any negative comments.

I got a bathrobe with a hood so I could feel less exposed, but everyone was super supportive.  One thing that might help your daughter is to try and remember that all the freshman are afraid to be out on their own for one reason or another; her reason just happens to be more outwardly visible.

I'm not trying to minimize the emotional toll (believe me, I understand how hard it is), and I'm not by any means saying to force her to do it, but it was very liberating for me having a hall full of girls know about my hair and not care.  We have to live with AU, but we don't have to let it control us.   I had so much fun during my freshman year of college and in hindsight, I'm so glad I had the courage to be open.

I'm 23 now and graduated college last year, but if you want and if you daughter would like it, I could chat with her via email or whatever to share my experiences and hopefully help her feel less nervous about school; I thought it might help because I do have insight into how she's feeling.  Let me know if you'd be interested.

Bravo, Lauren.  What a kind offer!!!!

I've never heard of this being done. Does she not have friends that know of her AU that would be going to the same college? That might make it easier. I elected to go to a community college, then transfer because of this. I did not want to do dorms or residential hall/apartments (my college doesn't have dorms). All universities make all freshman live on campus. I had AU when I was 8 and only a handful of my college friends know of it and only a select few had the opportunity to see me without a wig.

Good luck!

First of all, I am so sorry this has happened to you and your daughter. While I don't have any kids of my own, here is the strategy that I would use.

1. Speak with this person's supervisor and go up as many levels as necessary. Be polite and courteous but firm.

2. Argue in the grounds of medical AND emotional concerns. I would get doctor notes that provide information her alopecia from a medical standpoint (the general public really doesn't get it) and emotional standpoint (get a note from a psychiatrist and therapist stating that her not getting a private room will have negative mental and emotional consequences).

3. Review the college's policies on diversity, tolerance, acceptance and mental/emotional/physical wellbeing. They may very well be overstepping one of their own policies.

4. See if an Alopecia group will advocate on your behalf. There are multiple groups out there and the school would believe there could be some social media pushback if they do not work to help students in these unique situations. College is supposed to be a place where you grow and develop yourself. I would argue that a they are infringing on some of her basic rights to education.

Good luck. Patience is key. So is knowing the level of authority the person you are speaking with has and escalating the issue as necessary. The women you spoke with is probably dealing with helicopter parents that want their kids to have a private room for no good reason.

Let us know how it goes. <3



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