30

Long story short, I'm halfway through my PhD and have recently started receiving help for invisible disabilities from the university, although I have not disclosed the details of these disabilities to my supervisors. My supervisors know that I receive university support for 'medical issues' but they do not know specifically what these are.

A recent discussion with my supervisors lead to them saying they cannot support my request for accommodations or advocate on my behalf without knowing exactly what 'medical issues' I have. I have no problem disclosing specific situations I sruggle with (e.g. that I can be distracted easily, that I often misunderstand people etc), but do not want to put a label on the actual diagnoses as it does not describe how these disabilities affect me specifically and there can be a lot of misunderstanding around these diagnoses.

So my question is, do you think it is fair for me to not disclose my exact disabilities to my supervisors but request their support for accommodating my 'medical issues' and impairments?

As an aside, as per university policy I am not required to disclose to anyone except our disabilities branch (which I have done), through which we can request accommodations, support, and advocacy without needing to disclose to other university staff (lecturers, professors, supervisors) our disabilities (for example, someone who is visually impaired can request audio recordings on medical grounds without being obligated to tell the lecturer the reason for the request i.e. being visually impaired).

aparente001
  • 38,999
  • 8
  • 65
  • 153
Anonymous
  • 309
  • 3
  • 3
  • If the disability may influence your performance as a student then you of course have the formal right but will it be fair to the advisor if problems arise? There is probably no right or wrong here, mostly an assessment of what working relationship you wish to have. – Peter Jansson Mar 07 '18 at 18:47
  • 13
    What country are you in? In the US context, your disabilities office would normally require medical documentation of your disability and then determine what kinds of accommodations were needed. Have you done that? – Brian Borchers Mar 07 '18 at 19:05
  • 10
    Seconding @BrianBorchers comment - if in the US, it is not up to your advisor to determine accommodations - those are determined by the appropriate university people. The advisor's only role is to implement what is recommended. – Jon Custer Mar 07 '18 at 19:12
  • 7
    @BrianBorchers The first sentence of the post asserts that the relevant university officials are aware and that the OP is receiving accommodations. – Stella Biderman Mar 07 '18 at 20:45
  • Related regarding hidden disabilities and postdoc. – Dawn Mar 07 '18 at 20:57
  • 1
    @StellaBiderman in the US context, the faculty member shouldn't be negotiating with the student to determine the accommodations. The point of my comment is that in the US, the student shouldn't be asking the advisor for anything- the advisor should be providing what the disabilities office determined was required. – Brian Borchers Mar 07 '18 at 23:22
  • Hmmm. I seem to have missed the first sentence of the second paragraph (where they assert the professor is needling them) on my first reading. – Stella Biderman Mar 07 '18 at 23:24
  • 8
    I feel like "accommodations" is a bit unclear in the context of graduate work. It's not like in undergraduate, where accommodations might mean more time in testing environments, a particular position within the classroom, etc. Graduate mentors might need more information to actually be helpful that the disabilities office frankly may be unqualified to actually help with. – Bryan Krause Mar 07 '18 at 23:25
  • I'll add that A recent discussion with my supervisors lead to them saying they cannot support my request for accommodations or advocate on my behalf without knowing exactly what 'medical issues' I have doesn't fully describe the situation - this could be the supervisor saying "tell us or else!" - very very bad, and the direction it seems some of you have taken this post, or it could mean "we don't really know how to help..." which demands a completely different response. – Bryan Krause Mar 07 '18 at 23:27
  • 4
    In the US context, the advisor should never be involved in "supporting my requestion for accommodations." – Brian Borchers Mar 07 '18 at 23:29
  • I would like to chime in - even in other countries, supervisors have nothing to do with student accommodation. I know that I really resent if administration pesters me with the work that is not my business, and this including accommodating students based on their special needs. I would need more detail, especially the definition of "accomodation". – xmp125a Mar 08 '18 at 14:39
  • 2
    Agreed: What type of "accommodations" are being requested? You don't need to go into full detail about your medical issues, but for clarification, is this in regards to deadline extensions? Inability to complete work at certain times of day or in certain places? – Parrever Mar 08 '18 at 16:50
  • @IconDaemon: Hmm, I'm not convinced by your edit. "Invisible disabilities" is a pretty common idiomatic term for a fairly specific category of thing. – Lightness Races in Orbit Mar 09 '18 at 00:24
  • I’ve never heard the phrase used in the US in that manner. If you’re in another country, please edit your question or add a comment to clarify. – IconDaemon Mar 09 '18 at 00:26
  • @IconDaemon - I've heard it going back as far as 30 years ago. It may go back even farther. For example, a hearing impairment is a hidden disability. – aparente001 Mar 10 '18 at 04:35
  • @Philipp - I hope you'll undelete your answer. It's not an unreasonable approach in general, for those who choose it. (My personal opinion about whether to use that approach is that it depends, for me, on the situation.) – aparente001 Mar 10 '18 at 04:37
  • Hidden is a different word than invisible, which the word you used. End scene. – IconDaemon Mar 10 '18 at 23:52

7 Answers7

35

I have no problem disclosing specific situations I sruggle with (e.g. that I can be distracted easily, that I often misunderstand people etc), but do not want to put a label on the actual diagnoses as it does not describe how these disabilities affect me specifically and there can be a lot of misunderstanding around these diagnoses.

This is key. It sounds like you are fine with going into detail on your symptoms (and therefore your need for accommodations), but you're not comfortable disclosing the exact diagnosis. Given that your advisor is not your medical professional, they don't need to know the diagnosis.

So, if there is a need to, you can tell them your issues, but don't tell them the diagnosis. Be polite, firm, and center the conversation on your genuine need for accommodations.

"You've asked me about my medical issues and my need for accommodations. I'm not always comfortable discussing this, but it's important for you to know that the main symptoms cause me to be easily distracted, occasionally misunderstand people, X, Y, Z..."

If your advisor presses you for the "name" of the medical condition, you can say

"The precise diagnosis isn't really relevant - what's important here is I have genuine medical issues that need accommodations. Thank you for helping me do my best work."

The last sentence here reframes the conversation to the advisor's role of helping you to achieve success, rather than on their morbid curiosity about your specific diagnosis.

rturnbull
  • 3,784
  • 1
  • 18
  • 22
  • 1
    In my country, and I am pretty sure in any other EU country, exact diagnosis is never disclosed to employer, if you are sent to medical examination (e.g. if it is mandatory examination at the start of the job). The official letter only states whether you are fit for the job, and the needed accomodations (e.g. needs to sit straight because of back problems, needs good chair, needs to use glasses during work,etc) – xmp125a Mar 08 '18 at 14:41
  • I think it's also worth adding this: If they insist or demand (or, though I think this is extremely unlikely, threaten) in an attempt to get the name of the disorder, you should immediately speak to your school's disability office. The supervisor has no need to know, and if you're not comfortable sharing, you're under no obligation to, and your disability office will confirm that and offer suggestions for how to proceed. However, it's possible that they're not just your supervisor, so speaking to the disability office will let you clear things up either way. –  Mar 08 '18 at 18:43
  • 1
    "The precise diagnosis isn't really relevant" might be true, but hopefully there's a better wording for a supervisor. – user541686 Mar 09 '18 at 12:34
12

I think it's perfectly fair. You're under no legal or moral obligation to discuss your medical condition with someone else - and as has been noted, if this is in the US, your supervisor isn't even the person who should be deciding those accommodations in many cases.

If you get to the point that you believe you can trust your supervisor with that information and it's something you wish to discuss then you can disclose it and it might be helpful to do so, but that's a decision that should be left entirely to you.

Fomite
  • 51,973
  • 5
  • 115
  • 229
4

I would be suspicious whenever someone is trying to extract information with a crowbar, as appears to be the case here.

I have no doubt that when you feel comfortable disclosing more information about your hidden disability to a particular trusted professor, you will do so.

That is, in fact, the line I would use with anyone who pressures you for greater disclosure.

The other course of action I would suggest at this point is that you have a conversation with someone you trust at your office for students with disabilities, to let them know what's happening. (What should happen next is that that office should remind your department that if they have any questions about how to accommodate your disability, their office is available to assist.)

It takes time to build trust. Trust can't be forced.

Edit: Your symptoms do not need to be disclosed either. Bottom line, if the questions feel intrusive, the disabilities office can help you reinforce respectful boundaries.

aparente001
  • 38,999
  • 8
  • 65
  • 153
  • 2
    Although I agree both that disclosure should be at the comfort of the OP and that there could be reason for suspicion, I think it's hard to judge at a distance. It may be that the supervisor(s) feel like they don't have helpful enough information from the disability office and they might feel like they are more capable of helping if they understand more what the process is. That is, it is still possible that they are misguided in insisting on more information rather than malicious. I think disability offices are designed for undergrads, whereas a PhD is more personal between student and mentor – Bryan Krause Mar 07 '18 at 23:21
  • Typically a student would share quite a bit with a mentor, but this can't be forced. I don't want to attribute machiavellian intentions to the supervisor(s). It doesn't really matter what the supervisors' story is, although I'd imagine they feel frustrated and the root cause is probably lack of experience in this area. Still, the university has structures in place, and if they are helpful for undergrads I see no reason why they can't be helpful for grad students as well. @BryanKrause – aparente001 Mar 08 '18 at 13:37
  • Yeah, completely agree that it can't be forced and needs to be at the discretion of the student. I just don't have a lot of confidence that university structures designed for undergraduates will work well at the graduate level. The accommodations that are typically provided to undergraduates to help with coursework may simply not be relevant at a graduate level where research predominates. Accommodations for certain issues are a lot more straightforward than others as well (i.e., a sensory deficit versus attention difficulties). – Bryan Krause Mar 08 '18 at 16:48
  • 1
    @BryanKrause - I agree that the best way to accommodate is through disclosure and teamwork. How to get from Point A to Point B is the question. I don't think that pushing OP to disclose faster than feels comfortable will get them to Point B any quicker; in fact, it's generally counter-productive to approach someone with a disability with a crowbar in hand. So, for now, using the intermediary would appear to be the most effective way for OP to receive the accommodations guaranteed by the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. – aparente001 Mar 08 '18 at 18:12
3

As other commentators have pointed out, you are under no obligation to disclose disabilities to your supervisors. It also sounds like there are already processes in place for the disabilities branch to request specific accommodations. Presumably you are interested in receiving accommodations that cannot effectively progress through that channel.

It is certainly perfectly okay to give only partial disclosure of your disabilities if that is what you want to do. However, it is important to have some awareness of the predicament of supervisors that are trying to help with limited information. Bear in mind that their capacity to accommodate your needs will be determined --at least in part-- by the information they actually have. If the only information they have is a list of symptoms, without any medical diagnosis or purported causes/treatments, this may limit their capacity to determine what the symptoms of your disability actually entail and what accommodations are appropriate.

Accommodating your needs: Having a list of symptoms/situations where you struggle gives them enough knowledge to know that you need help in a particular area, but it probably does not give them the capacity to determine appropriate assistance. Your symptoms include a tendency to distraction, and difficulty understanding people, but these are also general difficulties that occur in all PhD students. Without more information it might not be easy for them to differentiate difficulties caused by your disability versus difficulties caused by in innate difficultly of a PhD candidature.

Understanding explanations of graduate-level academic work is difficult for most people in any case. So with this in mind, what exactly does "difficulty understanding people" entail in your case? You will probably need to explain this to them in more detail. Can they just explain things multiple times to fix the problem, or is there some more specific problem with a particular remedy? Without knowing the underlying medical condition, it is extremely difficult to judge what that description of your symptoms even means, let alone what accommodations would help.

Advocating on your behalf: Certainly your supervisors cannot advocate on your behalf in relation to your disability without any confirmation of its nature. Presumably the disabilities branch is set up for that purpose, and they are able to make recommendations based on more details knowledge.

If your preference is to give only partial disclosure of your issues, please bear these points in mind. You might want to start by trying to describe your symptoms with sufficient detail to differentiate them from the ordinary difficulties faced by other PhD candidates. Check with your supervisors to see if they understand your difficulties well enough to help, notwithstanding incomplete disclosure. If they don't, you may need to consider giving more specific information until they are in a position where they are able to identify specific assistance that would be appropriate.

Ben
  • 68,453
  • 9
  • 142
  • 263
3

I am someone with both obvious and non-obvious disabilities. There is a great deal of cultural debate and misunderstanding around my specific non-obvious disability. It did not become clear that I had it until late in my adult life.

I should add here that I have (finally) received a specific medical assessment and diagnosis (which can be very hard to get for non-obvious disabilities) , which has helped me to accept my issues and weaknesses, and have more confidence in my strengths.

My advice is to OWN IT. You are the expert in your non-obvious disability. You know how you differ from most other people who claim to have that issue. I would arrange an appointment with your advisor. Inform them in advance that it will be about a personal issue so that they are in the right frame of mind.

You may also wish to discuss this in advance with your university disability support unity / office for student with disabilities - they are hugely experienced and can guide you in what to ask for. They will support you in the case of an adverse response. You could also ask for a role-play of the appointment if you are nervous.

At the start of the appointment, after saying hello etc, say something like:

  • I would like to inform you that I have been formally diagnosed with syndrome XYZ.
  • I'm still learning about its impact on me and how to cope with it.
  • You may have heard about other people with syndrome XYZ, who have behaviour issues 123.
  • That does not apply to me. My diagnosis says I am different in ways ABC.
  • However, there are some issues that I do struggle with, for example 456.
  • This comes up in specific situations 789.
  • Could I suggest some solutions to these situations and discuss with you how feasible they are?

At the end, request a followup appointment on this specific issue, in maybe 1 month, or 3 months, to see what changes are needed, what worked, what didn't work. Keep a diary of what you have tried, and how well it worked. Remember, this is a journey. Your needs and wishes will change over time, and that is normal.

A huge number of people in academica have mental health issues, ADHD, bipolar, ADD, Autism, etc etc, - some studies say 1 in 3 of all academics have mental health disorders - so all this may already be well known to your advisor.

It may help to prepare a one page sheet listing the specific situations / issues you struggle with and the solutions. Be prepared that this sheet will be seen by others, left on desktop in open class etc, so don't put anything private on it.

Consider bringing this sheet to all workgroups and sharing with your close workmates - it will help the group as a whole to perform better, and also help you.

Tomato
  • 177
  • 4
2

When I was at university (in the UK) as a lecturer we adopted the following scheme: We made students aware that if they have any disabilities they wish us to consider (dyslexia, mental health, physical disabilities,...) that affected their studies, they should let the university office know. The office (after confirming the disability) then let the students home school aware. The needs (for example special arrangements for course work, exams) were then relayed with the minimum of information to the schools disability officer (this was a lecturer who had no background knowledge of any particular disability and was a pure admin role) who passed the information on to the staff taking the modules the students were enrolled on.

Your supervisor will presumably be told of any special circumstances you require that he can be of assistance with.

It isn't obvious is this approach is adopted country-wide, though all institutions have to comply the Disability Discrimination Act.

jim
  • 556
  • 3
  • 11
  • If this is in the UK, it would be great if you could make that explicit in your answer. I've been hoping for some time to see more information posted here about disability accommodation in countries other than the US. – aparente001 Mar 10 '18 at 04:29
  • @aparente001 Amended to show a UK university – jim Mar 10 '18 at 09:15
-1

Maybe it will be easier to answer to this question instead of yours: Why should I avoid to tell my supervisor ? are you afraid of his reaction ? or how he is going to judge you ?

If you have no answer to this question, if you are not afraid of something else, so tell him, I think that it will be easier for your cooperation

In general, as a PhD student, I have the feeling that we too often fear from our supervisor and we have such like a father/son relationship where we are strongly afraid from a too severe father. But it is important to remember that it is not the case, also your supervisor is human so he can understand your problem, explaining it can help in general.

So, in my opinion I think that you should do it

HanniBaL90
  • 261
  • 1
  • 7
  • 4
    This is very risky, and OP did already note that they don't want to do it because people misunderstand the diagnosis a lot. (That's a very good reason. I certainly wouldn't want to mention e.g. schizophrenia either, because most people think either "screaming axe murderer" or get it confused with multiple personality disorder. That's not going to be helpful at all when your real problem is that you didn't catch the last sentence because you thought someone else was saying something behind you.) – nengel Mar 08 '18 at 05:17
  • 3
    "Why should I avoid to tell my supervisor ?" OP gave a reason. "also your supervisor is human so he can understand your problem" He is human, so he can misunderstand it as well. And some people are immune to explanations. Also note OP specifically said that he himself can "easily misunderstand people", so a discussion could be misleading. – SK19 Mar 08 '18 at 12:46