‘It can feel like liv­ing two lives at the same time’:

We can’t fix the med­i­cal con­di­tion but we can try to fix the daily bat­tles we all face

The Irish Times - Tuesday - Health - - Front Page - Ais­ling Glynn

I’m the sec­ond of five girls. I grew up as they did, a happy healthy child. We lived by the sea and spent the sum­mers swim­ming and crab fish­ing. That sounds idyl­lic. Of course we fought with each other in equal mea­sure, as most sib­lings do.

I was born with a dis­abil­ity. But I didn’t know it un­til I was in my early teens. No­body did. I was di­ag­nosed with a rare mus­cle con­di­tion when I was in sec­ondary school. I re­mem­ber­ing walk­ing into the doc­tor’s of­fice and hear­ing the for­mal di­ag­no­sis. I also re­mem­ber walk­ing out the door. While ev­ery­thing had changed, I told my­self that noth­ing would change.

I went back to school the next day, and if any­thing, it made me fo­cus more. My older sis­ter did her Leav­ing Cert and went on to col­lege in UL. I fol­lowed the next year. I qual­i­fied as a solic­i­tor in 2010 and have been work­ing in McMa­hon & Wil­liams where I trained ever since. That sounds straight­for­ward.

Dur­ing the same pe­riod, I was at­tend­ing lots of med­i­cal ap­point­ments, in Ire­land and Eng­land. I lost the abil­ity to walk and began us­ing a wheel­chair, and with that I lost the in­de­pen­dence to do the ev­ery­day things that I had taken for granted for many years. But reg­u­lar life was busy.

I tried to fo­cus on the next exam, not the next med­i­cal ap­point­ment.

Reg­u­lar life

I have two diaries on my phone. One is for my reg­u­lar life – work, meet­ings, wed­dings. One is for my dis­abled life – doc­tor’s ap­point­ments, or­gan­is­ing PA hours and ro­tas, wheel­chairs, cush­ions, blood tests, shower chairs, phys­io­ther­apy, hoists, pre­scrip­tions, splints, air mat­tresses, in­jec­tions, neb­u­lis­ers, pain killers, scans, (and not for­get­ting ap­point­ments for my as­sis­tance dog Gina!). No­body teaches you how to live your dis­abled life. You learn pretty quickly that plan­ning is key.

It can feel like liv­ing two lives at the same time. You can’t sep­a­rate them. The chal­lenge is to try to bal­ance them. Fri­day two weeks ago I was in court. The fol­low­ing Mon­day I was in bed for a week on a neb­u­liser. You can do your best to con­trol, and plan and bal­ance, but some­times your dis­abled life takes over. Some­times, when I’m in bed, I look at the empty wheel­chair and I stop for a minute. I do ac­tu­ally ask my­self, did this re­ally hap­pen. By com­plete ac­ci­dent, there’s a fam­ily photo of my sis­ter’s wed­ding hang­ing on the wall just above where I park the wheel­chair at night. My fo­cus al­ways quickly re­turns to that.

I know that I have a dis­abil­ity. It’s im­pos­si­ble to for­get that.

Ready for work

This is where the two diaries come in. I plan my work­ing week as any­one would. At the same time, I plan who is com­ing to get me up and dressed and ready for work in the morn­ings. I plan my med­i­ca­tion and pre­scrip­tions, and phys­io­ther­apy ap­point­ments. Then there are the things you can’t plan for – hoists and equip­ment break­ing down, chest in­fec­tions, doc­tor’s ap­point­ments, wait­ing lists for wheel­chairs, pain. We all know the feel­ing when you need a day off from work. You don’t get to take a day off from dis­abil­ity.

If you need help to get up in the morn­ing to go to work, this ap­plies at the week­ends and when you’re on hol­i­days. Hol­i­days high­light the level of plan­ning needed for dis­abled life. Try search­ing for a ho­tel in Barcelona. Then nar­row it to search for wheel­chair ac­ces­si­ble ho­tels. Then nar­row it to search for a fully ac­ces­si­ble bath­room with a roll in shower. Then add an elec­tric wheel­chair, hoist, pro­fil­ing bed, as­sis­tance dog. There’s a chal­lenge! This doesn’t just ap­ply to Barcelona. I know of only one place in Dublin that ticks all of these boxes. I go to Dublin quite reg­u­larly for work and ap­point­ments. I have learned to book my ac­com­mo­da­tion and trans­port months in ad­vance. Plan­ning is key.

My par­ents al­ways fo­cused on my abil­i­ties. What is more, when I ac­quired my dis­abil­ity, their ex­pec­ta­tions for me didn’t change. They, and my sis­ters and friends have al­ways sup­ported me. I could be the best plan­ner in the world, but one thing is for sure, I could not live my reg­u­lar life with­out the con­stant help and sup­port from my par­ents, sis­ters, friends, PAs and col­leagues. Ev­ery sin­gle day. They too have to plan. Like many dis­abled peo­ple, I am hugely re­liant on in­for­mal sup­ports and I face the same bat­tles as oth­ers when it comes to for­mal sup­ports, like re­plac­ing my wheel­chair and equip­ment, se­cur­ing suf­fi­cient PA hours, ac­cess­ing pub­lic trans­port.

Un­for­tu­nately, we can’t fix med­i­cal con­di­tions like mine, but we can try to fix the bat­tles dis­abled peo­ple face ev­ery day, be­cause most of the strug­gles dis­abled peo­ple en­counter arise from so­ci­etal bar­ri­ers, not from a per­son’s dis­abil­ity.

We can choose to sup­port dis­abled peo­ple by pro­vid­ing sup­ports such as per­sonal as­sis­tance to en­able peo­ple to live with in­de­pen­dence, by uni­ver­sally de­sign­ing build­ings so that they are ac­ces­si­ble to all, by ad­dress­ing lengthy wait­ing lists for aids and ap­pli­ances, by ad­dress­ing nega­tive at­ti­tudes to­wards dis­abled peo­ple.

As a so­ci­ety, we can choose to fo­cus on peo­ple’s abil­i­ties, not their dis­abil­i­ties.

‘‘ You can’t sep­a­rate them. The chal­lenge is to try to bal­ance them You can do your best to con­trol, and plan and bal­ance, but some­times your dis­abled life takes over

‘‘ Like many dis­abled peo­ple, I am hugely re­liant on in­for­mal sup­ports and I face the same bat­tles as oth­ers when it comes to for­mal sup­ports, like re­plac­ing my wheel­chair and equip­ment

By com­plete ac­ci­dent, there’s a fam­ily photo of my sis­ter’s wed­ding hang­ing on the wall just above where I park the wheel­chair at night. I qual­i­fied as a solic­i­tor in 2010 and have been work­ing in McMa­hon & Wil­liams where I trained ever since.

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