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Brain injury blog by survivor

Brain injury blog by survivor



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Brain injury blog by survivor

Brain injury blog by survivor



Do I tick the disabled box or not? Brain injury is more complicated than that.

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These days there’s a form  for everything. Some ask open questions and leave a section for you to write in an answer. Others it’s just a tick box exercise. The latter is probably more to make data entry easier, rather than to assist the person completing the form. And then it asks if you are disabled. But doesn’t clarify what counts, why it needs to know, or how being defined as such will help. I understand that because here in the UK we have the Disability Discrimination Act, it is to highlight the individual to avoid discrimination. But unless you know in what way someone is disabled, how do you assist them? I don’t think a brain injury fits into this exercise easily.

My suspicion of such forms.

OK hands up, I know I’m overreacting. But here’s why: Some of you will know my Mum was Irish. She always felt forms asking about ethnicity were discriminatory, if they asked specifically if you are Irish. Previously I wrote in Agony of cognitive tailspin after brain injury about how Mum was proud to be Irish. She was acutely aware of how the rocky historic relationship between Great Britain and sectors of the Republic of Ireland, coloured some peoples view. So she questioned why they had sections for both Irish and European. As the Republic of Ireland are in the EU, Irish citizens could just tick European.

Mum was suspicious of being badly labelled because of the activities of the IRA. Most likely she was over imaginative, but no form should intimidate you this way.  She was trying to understand why they needed to know when an individual is from that specific island. And I find myself now doing the same with the disability box.

I’m not registered disabled, because you can’t.

Most people think the easy answer to this is, only tick “yes” if you are registered disabled.  But there is no such thing anymore. There are some Government benefits you might be entitled to, but if you don’t qualify there is no other database you can be registered on. This was a result of the Disability Discrimination Act coming into force in 1995. That was when the country started to realise that as disability doesn’t have to be physical, so dropped the register.

If students have conditions such as dyslexia, it’s important they inform the school or college. This is because in exams they will be given extra time. It’s important because the student may have the right answers, but needs extra time to be able to process the question and submit an answer. So it’s not enough to tick the disability box in this example, they need to know how to support them. Otherwise if the school provided a ramp for wheelchairs, but not extra time, the box did not prevent discrimination.

The term is very broad so I’m not sure how it helps.

If the box might not prevent me from being discriminated against, why would I want this label? I have enough pointless labels as it is, thanks very much. In Living with invisible disability caused by brain injury I was pointing out how there are times I wish the public knew they needed to cut me some slack. I meant things like don’t shove past me when you’re in a hurry, as my weak leg and poor balance might make me fall over. I don’t mean I want a neon light flashing over my head saying “Give this one a wide berth as it’s faulty.”

I’m sure there a hoards of people who disagree with me and find the disability box very useful. But recently I was at an appointment with a new therapist, and I asked it the box meant things like blind, deaf etc. Having told her I had a brain injury she asked if I was registered disabled. As I’m not (at this point I didn’t know that this is defunct) she said I should leave it. However, by the end of the session, having learned more about me she decided to reverse that decision. So there are probably a huge proportion of people who don’t tick the box, when in fact they should. But if there isn’t going to be an explanation of how you qualify in a tangible way, or what the use of this information is, it’s as much use as a chocolate tea pot.

Forms ask are you disabled to avoid discrimination. If they don't ask for details, how's this label going to help? Doesn't help understand my brain injury.
My blog on living with brain injury: Do I tick the disabled box?

Do you find being classed as disabled on paper assists you? I'm not sure a brain injury would ever not qualify, but have professionals ever argued this with you?


12 replies on “Do I tick the disabled box or not? Brain injury is more complicated than that.”

This blog is timed well for me, as today I have had an hour and half medical assessment.
I think I am doing well in my recovery, I am well organised, have a big file with information on my brain surgery, appointment letters and notes about everything all together, ready to answer any question.
Well that was until I woke up to fatigue, mental, physical, all over fatigue. Today I couldn’t function, I went through the questions asked and I slurred and stumbled over my words to explain, I am a trier, I am positive, I want my life back. The more I explained what is in place to help me get through the day, living with this brain injury, the more it dawned on me that I have something that doesn’t allow me to operate and function independently. I try to push on, it’s uncomfortable, it has consequences.
At the end of this exhausting assessment, I asked what it was for? it never even occurred to me to question it, it was for a disability allowance.
I said to my husband as he helped me stumble back to the car ‘does that mean I am disabled now’? He said ‘yes, I think it does’. I don’t understand the label disabled either, I know I am different, I know I rely on others, I am not independent, I am not carefree. But I am a trier, positive and am looking to improve, I am brave, funny, loving, and very grateful for all my support from friends and family, also I maybe disabled.
It’s a word , a label, people judge you if you wear it, it also describes the unique, the brave, strength and perseverance. We would embrace it if it was ‘warrior’ instead of disabled. It takes some thinking about, which is not easy with a broken brain.
I am disabled warrior!

Jo thank you so much for this! That’s how I feel. Yes I know I need support, but I don’t feel the label “disabled” fits. I am able, in some ways I’m a force to be reckoned with. But some days I’m not up to the fight and I need you to be gentle with me. But if everyone was honest, lots of people could fit into that description too.

After my brain aneurysm and subsequent SAH, I didn’t consider myself disabled as I was able to still do most things. But because of the fatigue I’m left with which affects me every day, I can only do these things with sufficient rest breaks.

My job was getting harder and harder to do so I decided to apply for a different one. On the electronic application form, they asked the question, do you consider yourself disabled? According to the Equality Act, the definition of being disabled is “…if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” As I cannot complete a days work without plenty of rest breaks, I therefore considered I had to tick the disability box and answer Yes.

The way I look at it now is I have a disability but that doesn’t meant I cannot live a relatively normal life (whatever normal is!!)

I live in the United States and had my mild TBI in 2005. About 18 months afterwards I was told by my Dr. That I had to apply for disability benefits. I was very reluctant because I didn’t want that label plus I didn’t believe I was. I was told by others that I would never get it because I was to young (39). So I eventually applied and had my independent exam and qualified for disability benefits. I cried more that day then any other after my injury. I still don’t fully understand how/why I got it.

I understand your distress. We are so conditioned about what it means to be disabled, that we see it as negative. But it’s more to recognise people’s differences.

I am a U.S. citizen but consider myself a world citizen. My wife and I were in a head on collision in 2005 and were both knocked unconscious. Our broken necks, collapsed lung, fracture talus all either healed or were repaired as well as possible. No one ever mentioned MTBI or brain injury until I brought it up a couple of months later. I realized I was no longer reading and the brain fog i experienced the first half of every day was not going away. I asked about brain damage and, because I still able to think and write notes, I believe everyone else figured my brain was okay.
Now, fifteen years later, I am 81 years old so I cannot say for user the cognitive issues I have never regained completely are the result of TBI or advanced age. I recently started a new business where I interview people. I can do it but I do hit a ceiling after too many hours of trying to focus. I am still working at improving by writing and challenging myself in other ways.

Lecoy, as a former recruitment consultant I appreciate how draining interviewing can be. People think it’s just hard for the candidates, but if you really care about getting the right person, it takes skill and effort to get there.

For me identifying as having a disability is empowering, validating, and helps me get the accommodations I need. After accepting that I have a disability, I was able to access more resources and support to help my recovery.

I think our society ingrains ableism into us whether we like it or not, so when we are faced with deciding to identify with the ‘d’ word it brings up a lot of shame and feelings of not wanting to be associated with that label. We tend to automatically associate disabled with less than and incapable, but that is far from the truth! Some people with disabilities are some of the most capable and innovative people I know. Disabled is not a dirty word.

Connecting to others with disabilities, whether that’s TBI or something else, has helped me accept my new self and move forward. I still have a lovely life with many things to look forward to, even though it looks different.

In the US there is no registry, and mostly comes down to the individual identifying themselves as such. When I realized it wasn’t up to anyone but me to decide if the disabled label fit, I felt a sense of empowerment and validation. No person or program can decide that for me.

Thanks Juliana, it really helps to hear how you have a positive experience from identifying as disabled, and I think you’re right that we often feel shame around it when there shouldn’t be any.

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