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Disabled students allowance and epilepsy
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Original post by That Bearded Man
My problem is only with the attitude wherby people believe they can make some money purely due to their epilepsy, if any day they have a seizure, it is okay with me if they have partial reimbursement.
Does beg the question though, as you say, most severely epileptic students are likely unemployed, thus, after university, how exactly do they get employment without throwing the Disabilities Discriminations Act at people.
Does beg the question though, as you say, most severely epileptic students are likely unemployed, thus, after university, how exactly do they get employment without throwing the Disabilities Discriminations Act at people.
Well, that's a complex question though I didn't say most severly epileptic students or graduates are likely to be unemployed. I said that people with epiepsy as whole have a greater level of unemployment or underemployment. This means that the vast majority can still be employed but that perhaps 15% of those with active epilespy are unemployed compared to 6% of the general population. It's still a minority. Unemployment is typically higher among non-graduates.
For my dissertation I looked at the history of the medical understanding of epilepsy, as well as its stigma. I built upon the work of others such as Pasternak (1981) in showing that the medical understanding of epilepsy is one of increasing rationalisation. However, against this increasing medical knowledge, public stigma and superstition increased leading to a lag between sophisticated medical understanding and public attitudes by the early to mid 20th century. It also looked at the distinction between felt stigma and enacted stigma - a distinction that became popular among sociologists such as Graham Scambler from the 1970s and modern stigma reduction strategies. So I have done some research in this area but ultimately only touched the surface.
The causes of stigma and unemployment are complex, and I'm not suggesting there is a single cause cause or that enacted stigma still doesn't exist. However, these are my thoughts: -
Surveys over the last 20 years have produed mixed results, but do still largely demonstrate that negative attitudes are increasingly uncommon among certain employers and both unemployment and underemployment isn't as great a concern as it used to be.
People often find the experience of higher education quite empowering. Successfully studying a course they enjoy and receiving appropriate support, perhaps for the first time in their life, improves their confidence and reduces feelings of stigma. This has benefits once they enter employment as it may increase their aspirations, thus reducing both unemployment and underemployment.
As for employers' own perceptions, adherence to disability discrimination legislation will vary, as will attitudes, but by successfully completing a degree a person with epilepsy is able to demonstrate to an employer that he or she is able to manage what can be a reasonably intensive workload and is also academically capable.
In short, I don't think we need to be overly concerned about people with uncontrolled seizures having to "throw" the DDA at employers in order to get employment, or facing a lifetime of unemployment. The reasons for unemployment aren't always down to negative employer attitudes but sometimes the disruptive nature of the illness or high feelings of perceived stigma can affect a person's career plans and this can be responsible for the unemployment. I believe that higher education, as well as the health care setting, can provide a good environment to help empower people and reduce perceptions of stigma. Unfortunately the NHS doesn't do this as well not in areas that still have fragmentary epilepsy services and no specialist nurses.
I'd like to clarify a few points.
First, I have a complex medical history other than the Epilepsy, which I won't go into on here, needless to say I can't comment on the extent to which the epilepsy alone is a problem.
My reference to feeling unwell was with reference to before/after/between seizures. I expected in a thread about Epilepsy, it would be clear that I meant "when the Epilepsy causes me to feel unwell", sorry if it wasn't obvious enough for you. The taxi home is there for me to use if I, for whatever health-related reason, as discussed with the DSA Needs Assessor, and don't feel safe taking the bus alone (I bought myself a year long bus pass out of my own pocket), therefore incurring a cost, solely on the basis of a disability that students without the disability wouldn't have to pay. I have used this once, ever, at a cost of around £4, it does, however give me some comfort to know that it is there, and if it was a more frequent problem, I wouldn't be out of pocket.
My problem here is with a group (any group, not just people with Epilepsy) being singled out and effectively branded. I would object to someone being referred to as "an epileptic", but not "epileptic". It's not a big deal though, just ignorance.
I've already answered the taxi point, in response to your other comments, I have known people at either end of the spectrum, some now completely seizure free, others who can't go a week without having quite a significant seizure, so I think it's quite unfair to generalise. It's also worth thinking about the different types of seizures, and the fact that not only the seizure itself, but the time before and after can be quite disorientating. Someone could have a partial seizure in a lecture without anybody noticing, yet they have still not been able to concentrate fully for a big chunk of it, therefore my example of a dictaphone being provided would be very reasonable.
First, I have a complex medical history other than the Epilepsy, which I won't go into on here, needless to say I can't comment on the extent to which the epilepsy alone is a problem.
Original post by That Bearded Man
May I ask how "feeling unwell" entitles you to a taxi home? Sounds irrelevent to your epilepsy
My reference to feeling unwell was with reference to before/after/between seizures. I expected in a thread about Epilepsy, it would be clear that I meant "when the Epilepsy causes me to feel unwell", sorry if it wasn't obvious enough for you. The taxi home is there for me to use if I, for whatever health-related reason, as discussed with the DSA Needs Assessor, and don't feel safe taking the bus alone (I bought myself a year long bus pass out of my own pocket), therefore incurring a cost, solely on the basis of a disability that students without the disability wouldn't have to pay. I have used this once, ever, at a cost of around £4, it does, however give me some comfort to know that it is there, and if it was a more frequent problem, I wouldn't be out of pocket.
Original post by That Bearded Man
Also, apparently "epileptic" is not politically correct, lord knows why.
My problem here is with a group (any group, not just people with Epilepsy) being singled out and effectively branded. I would object to someone being referred to as "an epileptic", but not "epileptic". It's not a big deal though, just ignorance.
Original post by That Bearded Man
Surely they don't occur often enough during a lecture to require a dictaphone?
Or indeed enough times in a year to require a taxi home?
Or indeed enough times in a year to require a taxi home?
I've already answered the taxi point, in response to your other comments, I have known people at either end of the spectrum, some now completely seizure free, others who can't go a week without having quite a significant seizure, so I think it's quite unfair to generalise. It's also worth thinking about the different types of seizures, and the fact that not only the seizure itself, but the time before and after can be quite disorientating. Someone could have a partial seizure in a lecture without anybody noticing, yet they have still not been able to concentrate fully for a big chunk of it, therefore my example of a dictaphone being provided would be very reasonable.
Original post by River85
Well, that's a complex question though I didn't say most severly epileptic students or graduates are likely to be unemployed. I said that people with epiepsy as whole have a greater level of unemployment or underemployment. This means that the vast majority can still be employed but that perhaps 15% of those with active epilespy are unemployed compared to 6% of the general population. It's still a minority. Unemployment is typically higher among non-graduates.
For my dissertation I looked at the history of the medical understanding of epilepsy, as well as its stigma. I built upon the work of others such as Pasternak (1981) in showing that the medical understanding of epilepsy is one of increasing rationalisation. However, against this increasing medical knowledge, public stigma and superstition increased leading to a lag between sophisticated medical understanding and public attitudes by the early to mid 20th century. It also looked at the distinction between felt stigma and enacted stigma - a distinction that became popular among sociologists such as Graham Scambler from the 1970s and modern stigma reduction strategies. So I have done some research in this area but ultimately only touched the surface.
The causes of stigma and unemployment are complex, and I'm not suggesting there is a single cause cause or that enacted stigma still doesn't exist. However, these are my thoughts: -
Surveys over the last 20 years have produed mixed results, but do still largely demonstrate that negative attitudes are increasingly uncommon among certain employers and both unemployment and underemployment isn't as great a concern as it used to be.
People often find the experience of higher education quite empowering. Successfully studying a course they enjoy and receiving appropriate support, perhaps for the first time in their life, improves their confidence and reduces feelings of stigma. This has benefits once they enter employment as it may increase their aspirations, thus reducing both unemployment and underemployment.
As for employers' own perceptions, adherence to disability discrimination legislation will vary, as will attitudes, but by successfully completing a degree a person with epilepsy is able to demonstrate to an employer that he or she is able to manage what can be a reasonably intensive workload and is also academically capable.
In short, I don't think we need to be overly concerned about people with uncontrolled seizures having to "throw" the DDA at employers in order to get employment, or facing a lifetime of unemployment. The reasons for unemployment aren't always down to negative employer attitudes but sometimes the disruptive nature of the illness or high feelings of perceived stigma can affect a person's career plans and this can be responsible for the unemployment. I believe that higher education, as well as the health care setting, can provide a good environment to help empower people and reduce perceptions of stigma. Unfortunately the NHS doesn't do this as well not in areas that still have fragmentary epilepsy services and no specialist nurses.
For my dissertation I looked at the history of the medical understanding of epilepsy, as well as its stigma. I built upon the work of others such as Pasternak (1981) in showing that the medical understanding of epilepsy is one of increasing rationalisation. However, against this increasing medical knowledge, public stigma and superstition increased leading to a lag between sophisticated medical understanding and public attitudes by the early to mid 20th century. It also looked at the distinction between felt stigma and enacted stigma - a distinction that became popular among sociologists such as Graham Scambler from the 1970s and modern stigma reduction strategies. So I have done some research in this area but ultimately only touched the surface.
The causes of stigma and unemployment are complex, and I'm not suggesting there is a single cause cause or that enacted stigma still doesn't exist. However, these are my thoughts: -
Surveys over the last 20 years have produed mixed results, but do still largely demonstrate that negative attitudes are increasingly uncommon among certain employers and both unemployment and underemployment isn't as great a concern as it used to be.
People often find the experience of higher education quite empowering. Successfully studying a course they enjoy and receiving appropriate support, perhaps for the first time in their life, improves their confidence and reduces feelings of stigma. This has benefits once they enter employment as it may increase their aspirations, thus reducing both unemployment and underemployment.
As for employers' own perceptions, adherence to disability discrimination legislation will vary, as will attitudes, but by successfully completing a degree a person with epilepsy is able to demonstrate to an employer that he or she is able to manage what can be a reasonably intensive workload and is also academically capable.
In short, I don't think we need to be overly concerned about people with uncontrolled seizures having to "throw" the DDA at employers in order to get employment, or facing a lifetime of unemployment. The reasons for unemployment aren't always down to negative employer attitudes but sometimes the disruptive nature of the illness or high feelings of perceived stigma can affect a person's career plans and this can be responsible for the unemployment. I believe that higher education, as well as the health care setting, can provide a good environment to help empower people and reduce perceptions of stigma. Unfortunately the NHS doesn't do this as well not in areas that still have fragmentary epilepsy services and no specialist nurses.
I'd imagined that as much as it would be a stigma working, it would also be a. If motivator that you, from a huge disadvantage, had the ability to work. Some, like me, I'd figured wouldn't bat an eyelid.
My point about the DDA is that I'd have thought being epileptic would be a huge negative on a CV. Surely an employer would discreetly pick against the person with epilepsy?
Original post by Ice_Queen
S'alright 
It's not nice at all. I am soon to start working on a project regarding epilepsy awareness - all kinds - soon so hopefully I can get something moving.
It's sad that they didn't believe you
I still don't think I could wish this on anyone. At worst, I might wish they could experience a seizure and being badly post-ictal, but nothing more. My life has not been made a living hell; there are people who have suffered much worse than I, but even that is bad enough.
Oh damn that sucks
I am a year up on 1/7 (obviously I can't exactly pin down the date of my last seizure with absences, but we took an arbitrary date, it was around 1/7 I got up to my current dosage) so I'll be driving! I am running around like a maniac and I'm so excited! No-one quite understands why I am so happy to be a year seizure-free, it's not just for the driving. I wish I knew people near me with epilepsy to share it with me.
Was it just a breakthrough or are you now upping your dosage (if you don't mind me asking)? I don't think I could get this far and have a seizure without breaking down entirely!
It's not nice at all. I am soon to start working on a project regarding epilepsy awareness - all kinds - soon so hopefully I can get something moving.
It's sad that they didn't believe you
I still don't think I could wish this on anyone. At worst, I might wish they could experience a seizure and being badly post-ictal, but nothing more. My life has not been made a living hell; there are people who have suffered much worse than I, but even that is bad enough. Oh damn that sucks
I am a year up on 1/7 (obviously I can't exactly pin down the date of my last seizure with absences, but we took an arbitrary date, it was around 1/7 I got up to my current dosage) so I'll be driving! I am running around like a maniac and I'm so excited! No-one quite understands why I am so happy to be a year seizure-free, it's not just for the driving. I wish I knew people near me with epilepsy to share it with me. Was it just a breakthrough or are you now upping your dosage (if you don't mind me asking)? I don't think I could get this far and have a seizure without breaking down entirely!
Last time I had literally just got up after sleeping in, potentially going 15 hours without my meds, my dose stands at 400mg tegretol twice a day.
The only parts I despise are the stigma of seizing in front of others, I get an aura before my seizure so I feel good, but then I realise what's happening and get terrified, then it feels like I'm drowning, my heart beat feels heavier, my thoughts rush like a flickbook, unable to think logically all I can do is primitive thought, i.e find a bed or a friend. I have a couple of seconds of no action, watching as the world seemingly spins, my thoughts rush and clump together, my mind distances itself, I can feel things slipping away, I know what's happening, but my thoughts are blinkered, all I can think of is what's going on and why is it differet to normal life. Then I wake up, confused, sometimes I screamed, sometimes I clutch my stomach in agony, sometimes I can't move due to the migraine. Sometimes I wondered why my head was wet and I have to ask a friend to take me down to A and E and get stapled.
And I'm one of the lucky ones.
And I too was ecstatic when it had been a year, good driving practice then I had another fit
oh well, at least I'm staying near my uni and my mates know the craic.
Must reply having epilepsy myself after a seizure
Original post by Healthy options
Must reply having epilepsy myself after a seizure
Contact your head of disability services and explain your situation. If you are a new first year, contact the school.
There have been times where my seizures have ruined my life. I dropped a drink from a seizure all over my iMac, it broke. I dropped 10 plates at a hotel I used to work at and 2 meals before I was diagnosed and they fired me. I've smashed glasses, dropped books, hot coffee. I was banned from my driving lessons. However my seizures occur every other second if I don't take my medication at the right time. I have to take it for the rest of my life. Sometimes I fall asleep and forget! I can't go outside if I forget my to take it.
But responding to the question.. WHY on EARTH would they give you a Mac/ laptop/ computer?! You have more chance of breaking it due to a random seizure than a person smashing it out of anger. They can't trust you to control or hold anything expensive. Let's be real here.
But anyone who is saying epilepsy shouldn't be entitled to anything are WRONG. I needed support, I break everything and it scares me to death. I would need money for a taxi because I AM BANNED from driving due to this condition. Some may be able to cope, but I hate it.
The medication makes me drousey and forgetful.
But responding to the question.. WHY on EARTH would they give you a Mac/ laptop/ computer?! You have more chance of breaking it due to a random seizure than a person smashing it out of anger. They can't trust you to control or hold anything expensive. Let's be real here.
But anyone who is saying epilepsy shouldn't be entitled to anything are WRONG. I needed support, I break everything and it scares me to death. I would need money for a taxi because I AM BANNED from driving due to this condition. Some may be able to cope, but I hate it.
The medication makes me drousey and forgetful.
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