Prior to having Jemima I had been studying for a Masters Degree in Addiction. Well I had to drop out due to pregnancy, impending divorce and other factors, but have silently longed and yearned to return to it, so a few weeks ago I figured “sod it” and reapplied.
this was the out come:
This is a copy of a blog I wrote for a Bisexual Bipolar site which is new, but thought Id share here too:
Battling multiple identities can and is complex, there is always a niggle at the back of my head when meeting new people as to just how open about life to be. Do they need to know my complicated history of mental ill health? Do they need to know I’m pansexual, gender fluid and polyam? It will become clear I’m a parent but does it need to be said out loud? Or are or is there a way of keeping these things contained, bit like the elusive round peg fitting snug in a round hole, only I am not a round peg and my life is far from a round hole, instead it is a star shaped peg trying its hardest to be transparent with life, as why hide what is intrinsic and by denying it to those whom matter is denying it to me.
Childhood plagued with attraction to humans, genitals or wanted genitals had no impact on the attraction, just people as a whole fascinated and still do send me off day dreaming to what could potentially be, and how will they perceive me? Will they get to know the hyper, energiser bunny? Or the on the floor taking all energy just to sit and rock when the depths of depression creep in, whilst the whole time riding the wave of pansexuality and the non-conforming to heterosexual and monogamy idealogy. As years passed names and terms begun to feature, they made sense, but bipolar why that, am I a bear disguised as a human, for I knew of human bears and fairly confident I don’t meet their requirements. And Bisexual didn’t work as gender is a spectrum, certainly not binary so why make me choose a side to which my attraction lay?
Mid 20s, attending Bi-Con for the first time, realising hey its ok I am me, I am valid, and others like me exist, they will embrace me for me and to hell with mainstream society this is heaven on earth and I don’t want its tranquillity and self-care to end, only to be on a downer when it did, counting days till the next 4 days with epic humans who got the real me, unmasked and unfocused.
But then just as I found self-acceptance back into the closet I was forced, bolts on, rope shackled to failing limbs as parenting begun. Asked at stay and plays “what does your husband do” whilst muttering to myself “rot in hell as he was a violent pig, feeble excuse of a human none I am glad to be shot of” hiding choosing not to disclose the then female with me was in fact my girlfriend at the time as the boy I was regularly with was also my boyfriend, how to explain this when raised as an Orthodox Jew, it’d certainly get the community talking for all the wrong reasons.
Time passed and we come to the present day, mental wealth is slowly once more rebuilding, a solid group of friends who get me for me, they embrace the star peg and avoid at all costs attempting to get it to conform, the summers bring solace and Bi-Con once more, my daughter is 6, aware her parent is hers, but different to many, yet due to the naivety and innocence of childhood takes it in her stride.
Life might be days of highs, weeks of lows, but the intrinsic fabric is there, no shits who knows, I am Lea, I am Pansexual, Polyam, Bipolar and won’t fit as a round peg in your hole for you nor anyone and for the most part I am loved and cared for by my chosen village and they are epic.
Bit of a bold statement to make you may think, as what is their to love about a world not geared up for those of us who fail to see as the sighted world can and does?
Thanks I guess to the severity of my KC I associate more as someone who is blind in a once sighted world, but take away the KC and I am still disabled due to Fibromialgia and ME not to mention surviving several mental illnesses.
Take away the battles I face, be it magnifying iwth a 20x mirror to do make up, or a hobble holding 2 banisters to safely get down the stairs on a morning to make my daughter breakfast, or battling deliberating anxiety just to do the school run, would I be me?
whilst disability doesn’t define me, it is often the first thing people notice about me is a cane in my hand n wondering why iv a slight limp, struggle with eye contact and appear to be “away with the fairies” wrapped in my internal world to protect me from the judgement of the sighted, able bodied, sane headed views and perceptions or should that be misconceptions of those whov no idea just how much energy it takes to function, to even type this post.
Yet being disabled has its perks, queue jumping at theme parks, 2 for 1 at the cinema and live music, been able to get upgrades on flights, front row seats to plays my daughter does at school and plenty more.
Disability is what you make of it, after all as someone famous once said “the only disability in life is a bad attitude” which in turn makes me question and ponder which parts of me and intrinsic, which are due to the cards life dealt to me and which would I not be me if I didn’t live with. Yes at times it gets me down and frustrates the hell out of me, but for the most of the time, watch out world I might be disabled but damn it has opened my eyes far more than many would realise n given me a deeper level of empathy than many would comprehend.
Live life, enjoy it, learn from the obstacles and remember you are able to educate through experience and that is what matters, if you don’t learn from it how can you expect others to comprehend how it is for you n those like you?
Love it or hate it school runs are one of those things as a parent at some point the majority of us find ourselves stuck with.
I am very fortunate that for the most part on a morning my dad will take Jemima for me, and on a afternoon my mum will collect her, thus saving me valuable spoons as her school is about a miles walk, yes their is a bus service but it is unreliable and cabs as a round trip just to get there and back let alone twice a day would be approx £10 so is financially not viable. It is times like this I despise being visually impaired as means I am unable to have the luxury of being able to drive a car.
On a Wednesday my parents aren’t around in the afternoon so it is down to me, so time to ensure I am adequately dressed so I don’t either over heat or freeze, gotta love auto immune systems that are defunct and fail to work on top.
I digress, I don’t like the school run as well a) getting to school means crossing a couple of major roads, yes their are crossings, but today for example some moron decided to wait till I was literally half way across the road and then sped up and got literally mm from my cane tip! Seriously sighted humans what is with the stupid? or are you just plain ignorant? b) I hate the making small talk with other parents, as they are all so cliquey, yes a few are tolerable but is that due to taking pity on me due to multiple disabilities or cos they give a shit? Example last year when I had a breakdown etal “let us know if you need anything” 30 people said it well families yet how many could I actually rely on? oh yeah the usual suspects of 4 different families, the rest you ask? full of excuses and abilst nonsense! So I quit asking as it saved the anxiety of will they actually do it out of pity or cos they want to do the right thing?! c) their is the waiting around as the class finishes 15:30 but can guarentee the teacher wont open the door till closer to 15:35 so I am stood wobbly legged leaning on my cane for support and praying I don’t go kersplat and make a dufus of myself once again.
On the other hand, I love the walk home with my daughter, listening to her day, her wisdom of “no don’t go that way some unkind human has left a bin in the way n you will walk into it”. A precious bit of time without technology and to talk, but also reminds me she is growing up rather quickly (she is 6 on the 26th of January) and to me she is still a newborn nestled against me seeking my breast to nourish on.
So often as a parent whom happens to be disabled I read of other parents in a similar situation find their small humans school neglect their needs as a parent, and it makes me experience a host of emotions. Guilt being the central one when I analyse them, guilt because Jemima’s school have always asked me what as a disabled person I need from them, what they can improve on n what isn’t working.
Her spellings get emailed to me, letters instead of brought home emailed, she has a end of term play/assembly on Wednesday this week coming up (she is a giraffe) and her class teacher has tonight yes on a Saturday at 8.20pm emailed me to inform me she has reserved Chris and I seats on the front row, whilst I still wont be able to see much if anything the little I will will be clearer than fighting to see over another parents head.
Simple acts of kindness which mean far more than a blog can say. If you happen to be a disabled parent and reading this, don’t be afraid to inform your child/rens school what you need from them, they have a duty of care to not only your child but also to you as the parent. Hold them to account.
Ableism, that thing that as disabled people we seem to only ever think we will experienced from the abled world, when sometimes as I have recently come to realise and accept as a disabled person I too am ableist, but to myself not others.
Perhaps I should expand: I have lived experience of sight loss to point of being registered blind, I lived experience of Mental Illness (predominantly manifesting itself as Complex Post Traumatic Stress Disorder (cPTSD) BiPolar Disorder, and physically I battle Fibromialgia, Eythromialgia and ME. For the most part the mental side of things had been stable for just over 13 years until earlier this year
Then throw into the mix I am a solo parent, solo parent of a fierce and independent, headstrong, taking no prisoners soon to be 6 year old,, and the reasoning behind the internalised ableism may begin to get a little clearer? For I have always said to her “you can do anything in this world you set your mind to provided it is within your physical limitations” but yet at the same time mindful their is a lot she does that the majority of small humans her age have no experience let alone comprehension on how to tackle.
A long discussion with a friend whom faces similar physical health battles and him urging me to have my small formally registered as a young carer for all she does now, but will continue to do if not more so as she gets older, and all the additional support she DESERVES from a multitude of places including school and social services.
So I contacted social services, met with a wonderful social worker, admitted just how much Jemima actually does and how whilst on one hand you could say she is a small human and it is their nature to want to help their big, but on the other she does do far more than is expected.
if truth be told I was too frightened to admit to myself just how bad my worse days are and just what a blessing she is with all she does. Probably cos at the back of my mind I am aware there are many disabled people whom are limited far more than I am by their disabilit/ies and I feel guilty taking a service they or those whom care for them could and should benefit from.
Like many I was born sighted but a degenerative cornea disorder (Keratoconus – KC) was eventually diagnosed and here is the rest – again a rehashed repost from a past rant I have had but still valid
I often say I am visually impaired living in a sighted world, for I was born sighted and it was only in my 20’s that I became someone who lives with significant sight loss. I know how the world should look but it no longer does for me.
When I received what at the time was the devastating news “you are now legally blind” I grieved, In denial as this can’t be happening, it can’t be happening to me, why me? I was angry, as there was so much which I wanted to see in this world, I found myself barganing with myself if I don’t close my eyes and sleep then I will hold on to the limited sight I have, if I don’t acknowledge it then it isn’t really happening to me? Only it was. Depression crept in and as someone who is no stranger to severe mental ill health I knew this is when I had to reach out to get some help for the new life I was going to embark on, therapy via the RNIB was invaluable as enabled me not to burden friends and family but talk over the phone with a total stranger who had themselves faced a similar challenge in life and she was able to help me focus on what I had and to accept what I had lost. In time I begun to accept the fact I had been very lucky to have such good sight for so long and that yes whilst my future would be someone who is legally the status did not have to define me and like many other facets of my life could be something I could choose to take on head first and try my hardest not to let beat me.
It may have been just as easy to contact LJWB for support, but something stopped me, stopped me for a while and I guess that was stigma and shame. Stigma that I was a young woman in my mid 20’s who was half way through a undergraduate degree and as at times it feels like the whole of LS17 knows each other, what would they say? Would I then be treated different by people I know? What would they say to my family, although logically I knew confidentiality would be kept illogically I felt that I had a neon flashing sign on my head that ironically all could see cept me. Self stigma prevented me as well, for developing sight loss happened to the elderly when glaucoma or cataracts took place, so if I was to make contact would I be shunned due to my age? In time I did contact LJWB who were also incredible and empowered me to know my rights, regain a sense of humour and to adapt to my life as it is now.
Realising I needed to use a long cane was not a easy decision to make, but when I sat down n thought it through sensibly I had to accept in order to be safe it would be a better idea to get a cane and get some cane skills. As it is not as straight forward as get a cane and waves it back n forth and magic happens, even now 7 years on their are times when my stomach is black and blue from where I have misjudged a path or Joe Public has got in the way and boom the cane handle has jabbed me. Especially now I am a parent it is vital to me that when out and about with Mima that the world knows yes I have a small person with me but also I do not have the sight I once had so please take a extra moment to either help me or assist me, don’t shun me, don’t place unnecessary obstacles in my path and please do not pity my small human growing up as my “carer” as she is anything but that role. She is a very head strong, determined, confident, independant, beautiful soul who enlightens my world just by being her, and to put unneccesary burdens on her young shoulders would be unfair of me to do, so please as a member of the public don’t you weigh her down.
If I had a pound for every time I was asked to “speed up traffic lights” as that is apparently what the spinny thing under the press button does, or each time I found chewing gum stuck under them I would be a millionaire by now, but instead I will simply chuckle and inform you the true meaning of the swizzle when you make such a comment to me. (they actually allow people like me to know when it is safe to cross the road)
Living with sight loss to the degree mine is however is not all bad, 2 for 1 at the cinema, music concerts, the theatre (not that I have been to the later in a long time) sport events, gaining some incredible friends who live with similar challenges who I can laugh and joke with about the daft things which have happened is a bonus (you should know whom you are and your friendship is something I cherish dearly)
Please do not ask me “what can’t you see?” as that is negative, instead perhaps ask me “what can you?” as due to my eye conditions it fluctuates daily often throughout the day, please if you see me out with my small human help me to find her if say for example she is at a busy place ie a birthday party, describe things to me, I love detail it might be boring to you, but that is HOW I SEE! Don’t be afraid to talk to me about my sight loss, you can’t catch it! It is ok to have a laugh and joke with me about things, please don’t wrap me in cotton wool and bubble wrap and pat me on the head in a passive aggressive way. Ask me what I need from you. Be a friend and remember it is ok to just treat me as a person. Just do not pity me.
As time evolved and now in December 2018 we are getting on to 8 years down the road from that day when the light so to speak metaphorically went out in my world, I still have days where I just want to remain in bed pull up the covers and ignore the world, yet I owe it to myself to find a way out of bed to face the world and the challenges it brings.
I wrote this initially as a rant on facebook but it is still valid now.
Dear parent stood in the school playground,When you see me waiting for my daughter, I am curious to what you see? Do you see the parent who is stood holding a cane to guide their vision, a parent who has lost most of their sight over the past decade, the parent who holds a degree and craves to get back to the Masters level education they were receiving prior to falling pregnant? Do you see a parent who like you has a young small person in school, receiving a education in which they are constantly reminded they can and they will succeed? To ask questions when unsure to gain a better comprehension of the world around?Do you see obstacles in my journey? which you add to by not assisting when out n about, by talking about “that white stick, why does she have it?” questioning all but me?! Does the fact my sight is impaired actually cause you to challenge your own perception of disability in a way that you never actually gave much thought previously?When our children are attending a friends party and I ask you where my daughter is, it is not simply a case of if I wore glasses I would be able to see her, or if my phone was in my bag shed have my attention. Or you pointing and informing me “she is over there”. Wearing glasses wont actually “fix” my vision, if they would has it not occured to you I would have begun to wear them long ago? and as for my phone I actually use it to magnify to aid me so that I have a vague idea of what my daughter is up to, but when I ask you it is because I have assumed you might be in a place where your vision is better than mine and you can use words to describe my daughters actions to me and in turn enable me to see all which she and her peers are doing. Words used by others can and do become my eyes, describe all to me even what may to you be mundane as it is the detail which I adore and lust after which enables me to see and appriciate the detail of every day occurrences which you take for granted. Please don’t simply point as I can not see where you are pointing and as such you are not actually answering my question, but instead you will cause me to ask more from you.My daughter is incredible, at four years young she is able to confidently describe her world, guide me when we walk so “mummy careful their is a bin in your way” so I don’t walk into it, she has the confidence to explain to people “her eyes are a little broken but she is still MY mummy and I love her because she is MY mummy” she is a cheeky girl with a incredible fearless passion for life, she has a enchanting sense of humour which attracts friendships around her, I am proud of her every moment of every day just because she is herself. Yet at the same time she does more than some other children of her age, she knows already how to cook simple things, to place food on a oven tray to pass to me to cook her dinner, how to make a simple sandwhich, what to do to run a bath, where things needed for day to day tasks are, as before we leave the house “have you got your cane, do you need different sunglasses to protect you as the sun is strong”. She knows how to with confidence and assertion answer basic questions about why her mummy is disabled and to answer them in a way which as a adult you are heard to say is “challenging”. But perhaps instead of finding it challenging, have the guts to come to me, talk to me, find out more about me and how my world is, and be a friend not only to my daughter but me as well,and then dear parent in the school playground you will realise I might be blind but their is far more to me than that.
Challenging Parenting Perceptions 