I feel like a dog with a bone- all sparked off by a comedian’s use of the word re***d and almost 30 years of being the mother of a beautiful daughter with learning disabilities.

This blog was not meant to be going here- it was meant to be looking in a different direction but there is a pull as strong as an umbilical cord that brings me back time and time again to things she has taught me. The things that are important, about what we value and who we are.

During the discussion about the word ‘re***d’ Frances Ryan, a columnist on the Guardian, suggested that much of the criticism was coming from parents of people with disabilities and suggested that this is a debate for people with disabilities themselves. This is not the first time I have heard this sentiment.

This is a tricky place for me to to be then- the mother of a woman with learning disabilities who does not communicate with words. Through her I have learnt a great deal about exclusion, isolation, pity, inequality and inhumanity but also about love, respect, joy, friendship and resilience. I would never try to speak for her but I do think that the experience I have as her mother and the proximity I have had to her life gives me an understanding of the issues and struggles she has faced.

She has introduced me to a world which I didn’t know before her birth. Without my daughter maybe I would still be ignorant of the issues facing people with disabilities and the hurdles they face in accessing much of what we take for granted. My attention might have been caught by a national scandal but would I have been in it for the long term? I’d like to think so but more likely I think not.

So when I read a comment that effectively says this is our argument, not yours, I think, maybe there is another way.

Rather than building walls, barricading ourselves in and making our world smaller isn’t it time to throw open the doors, welcome the debate, shine a light on inequality and discrimination and seek out a wider platform.

The world of disability has changed in the last 30 years but too little. There are small patches of brilliance but from what I see the fight has become harder, the provision scarcer, the lack of understanding has stayed much the same.

To all the people out there who have beaten the odds and withstood the criticism to get their voices heard I applaud you. Not for a minute would I want to take that away from you, nor could I. But I would like the issues you have faced and the issues families have faced to be more widely acknowledged and I don’t believe this can happen through isolated voices.

I would like the disability movement to gain more traction so that it can come out of the margins and into the mainstream. I wish that the world would look more closely at these issues in the same way it looks at other issues like feminism or race or gender but it doesn’t and I don’t think it will while they are seen as minority issue. It should be all of societies shame that such inequality exists but it isn’t.

I believe that collectively we can achieve more than we can separately. And while Frances has a strong voice and a wide platform I dare to suggest that by inviting others in, embracing their support and being open to their challenge the message will become stronger. We are, after all, aiming for the same thing, a better and more inclusive world.

Is there still time in this fast moving world for balance? I wonder.

Is there time to think through an argument, listen to both sides, digest, cogitate, debate, reason.

Is there room to listen, really listen before you come to a conclusion and jump in with both feet landing firmly on one side or the other.

I can’t help feeling that now more than ever, the world, particularly with social media, calls quickly for a reaction. You don’t want to be lost as the herd move on to the next scandal, the next outrage, the next war.

But here’s the rub, if we don’t find time to listen and listen with all our attention aren’t we in danger of thinking we know best and then seeking out others for our tribe who think the same?

Wouldn’t it be better if our tribe was more inclusive, that we could recognise we are all the same, we all have valid experiences. Is it just that some people have louder voices, better platforms, stronger words and those that don’t may just need more time and a bit of support to be heard. Does it really matter where that support comes from, a family member, a friend, a support worker as long as they can love and listen, really listen.

Surely, the wider the variety of voices that contribute the better the discussion.

Recently there has been an animated debate over the use of the word ret**d in the title of a CH4 documentary. I haven’t seen the documentary yet but I have thought long and hard about the issue. I have talked to people. It is not clear cut. There are those that think outright the word should not be used, there are those that think it was used for publicity, there are those that think it is ok for Rosie to use the word to take ownership back.

Personally it is not a word I would ever use. I have stopped reading books when the word has appeared on the pages and switched off films. I have never heard it used in my proximity but there have been others that have made me stop and weep.

I know it is bandied about in playgrounds with many other offensive labels. I really dislike the use of the label, the sound of the word but what I really hate is the sentiment behind it.

This is not only an issue for the ‘disability community’ and its allies but it it is an issue for the world at large. it goes way beyond the title in a documentary on Ch4, way beyond our small world but right into the matter of what it means to be human.

I still don’t know how I feel, I see the hurt on both sides of the argument. Rosie has defended the use of the title here and I really hope, for her and us, the documentary will make this clearer. But but what I really hope is that the world can be a kinder and more inclusive place. That the language we hear and use reflects what is in our hearts and minds and if we don’t know we listen not just to those with the loudest voices but those with the quiet voices too.

Brie Ruais: Uncontrollable Drifting, Inward and Outward Together

There’s silence in the land

the sounds around are wind or rain or sleet or snow

I sit in the lee of the furrowed field and bide my time

as the seeds I plant begin to grow.

Vegetable (noun)

mid-15c., “non-animal life,” originally any plant, from vegetable (adj.); specific sense of “plant cultivated for food, edible herb or root” is first recorded 1767. Meaning “person who leads a monotonous life” is recorded from 1921; sense of “one totally incapacitated mentally and physically” is from 1976.

I remember on that baking day when a good friend  said I think she is a vegetable, you know, the way she sits and rocks and doesn’t talk. In case, I didn’t know what he talked about he rocked too.

I remember another time when dressed in easter best and plastered social smiles, you talked of them and they and vegetables as if it rhymed. I hugged my daughter tight, grabbed my son and perfectly polite left before the eggs were found

I remember in generations down the line the midwife told my mum it’s best he’s dead. alive he’d be a vegetable 

When I hear that word said that way I think of 50 years of harm

Instead of silence where I am asked to stay I respectfully suggest some other words like person, daughter, child

I have strange likings for words. They come from nowhere and surprise me. I hear myself say… I have always liked this word or that word. A word I liked yesterday, archipelago. I still like it today.

The last couple of weeks have been tricky. Except when I say tricky I don’t mean tricky. I mean more than tricky. The kind of weeks when you wish for a new one to start but wishing doesn’t make it happen and when it does it is just the same as the last one.

This leads me to a conundrum, one that we are all familiar with. The one where you want to be honest and tell it how it is but don’t want to deal with the, Oh I’m sorry ,or the, poor you, or the, you are amazing or the if you just do this, response. You are looking for neither pity nor praise but I think you are just looking to say this is my life. Weird, hard at times, out of the ordinary, relentless, tiring, scary, pressurised, difficult. Most lives are all of these things at times but while no one on wants to play a top trumps of misery, carers lives may contain more of these things more of the time.

I don’t want to moan, I don’t want to be, Oh poor old me but I don’t want to be artificial, I don’t want to paint my world in rosy hues when recently, like the weather, it has been grey. Not just grey but grey with flashes of lightning and rolls of thunder.

I feel that if I fake it, I just make it more difficult for other carers who may be struggling to say what they feel and that is not my intention. Nor do I want to say nothing and stay silent behind closed doors.

It is hard in these patches(!) to do anything but especially hard to drag yourself out of it. You may know what keeps you healthy. Yoga, writing, dancing, walking, reading and gardening work for me but I haven’t done any of them for weeks. I admit having a herniated disc hasn’t helped but it is my mind I am worrying about as much as my body. As my pain worsened my mood blackened. Lost in a world of sugar cravings, Netflix binges and scrolling. Or just lost.

But the pain has lessened and today I am taking little steps back. I met with my lovely group of creative carers this morning and we talked poetry, drew and wrote. We admired the work of Jennifer Wong and Ocean Vuong and escaped to a different time and a different place. We know what our lives are like but we know without talking about it. Sometimes you just don’t need words.

As I write this, the sun is coming through the blossom on the cherry tree and there are small patches of blue sky. They are really, really small and sometimes almost totally concealed behind grey clouds but they are there.

So I start one more time to put myself back together again, to ignore the persistent voice that tries to draw me to the dark side, to pick up the pieces, to rebuild rather than knock down.

If you would like to join a group of carers who write please do get in touch, we meet online and have a couple of spaces available. We talk about everything apart from care not because we don’t care but because it goes without saying.

‘I have no choice or I have a choice but it is not a choice’

I am part of a battalion 
of women that march
trance like into cross roads 
while traffic is moving 
creep into coal seams 
sit by unmarked graves 
sweep the dust 
conceal the stains


I zig this way and that 
but cannot reach 
the open door
in the river I sit naked 
clear water laps my ankles
I pull my dress skirt up 
cover my face 
my voice is speechless

I drop one foot 
from concrete onto glass 
I fall in a diagonal line 
when I pick myself up 
petals fall from my lace dress

the moon descends 
as the last chorister sings 
the high notes scald the sky 
my silk robe hangs 
from my bleached frame 
my pain is clutched 
in my fist

 I measure out my frame 
in fingers and thumbs 
I twist tissues into tourniquets 
I tell myself lies

I drift under street lights 
in a gold dress 
arm pits open 
hair hanging 
like closed curtains

I build castles 
for dreams I do not dream 
I twist minarets from shells 
yet I do not hear the sea 
I paint ceilings with stars 
and grow dark eyed 
pansies on the stairs

pale ghosts pass by 
vast halls are hung 
with unsaid prayers 
chandeliers drip 
amongst empty chairs
prostrate stockinged feet 
beseech, I ask for peace

when Pan pipes play 
I feel the music 
at the edge of a canyon 
I fall to my knees
 
the dry rocks of the quarry 
are marked horizontally 
as a tree grows 
from a woman 
in a red dress 
I see the sun set

joy passes 
as my battalion snakes 
past a bucket of indifference
fingers clickking
fists trembling 
temples throbbing 
eyes closing

I am care and this is my choice


                                                                                       after 'Pina'

This poem first appeared here (a lifetime ago): https://icefloepress.net/2020/12/01/i-am-care-a-poem-by-linnet-macintyre-w-a-painting-by-m-s-evans/

In our last, ‘creative’ group I shared the poem, Boxes by Nikki Giovanni. You can listen to it here,

Both happily and sadly, it resonated with our group of amazing women, all carers.

Boxes can be a useful shorthand, a quick tag but not when you are put in a box by others, or worse still, when you put yourself in a box and shut the lid. Boxes then constrain you, the walls close in, there is no space to breathe, the air is stagnant. Even when tied up with ribbon, lined with tissue, embossed with gold they can turn from convenience to glittering cages.

Having a daughter who is profoundly disabled in many ways defines me. She make me feel whole. When I am with her I feel more like myself. Her life is inextricably attached to my life. Her quality of life is caught up with my quality of life.

As she moved into adulthood I became defined not as her mother but as her carer. A box I did not reject. I felt it justified my existence when work became impossible. When I was asked what I do, I said, I am a carer. Whilst this was a convenient answer, the more I said it, the less of me I felt.

Perhaps it is the same with all professions. If someone says they are a dentist you don’t assume that is all they do, or a builder that they build all day. Yet, as a carer you know that it is a 24/7 job. It fills your heart and mind not just for waking hours but often, like me, you can be on call all night too.

It is more than a definition of a career but you cannot let it become a whole life.

Each of the women in our group are by definition carers and will remain so for the duration of their child’s life. But each of them is so much more.

The reason we meet is to remind ourselves of other aspects of ourselves, to tap into the sometimes hidden/difficult to reach parts, to think together, to create something and to be more whole, more complete. It is a process with many laughs and much sharing.

Here’s are some of the responses to this week’s poem.

If you would like to know more about our group please do contact me- we have a couple of places left and meet on Tuesdays (usually) once or twice a month,

From the age of 11 I went to a very strange school.

The art class was held in a light room off an oval gallery. It was taught by a nun clothed in grey. Her hair was a lighter shade of grey, small strands escaped from her wimple. She had long fingers and olive hands. I remember her well, as I do the time she thought it would be good for us to see a dead nun. During class she led us to a small room where a ‘sister’ lay. A wax corpse with rosary beads twined around her clasped hands. We filed around her bed. My first experience of a dead person, my last experience of a dead nun.

I didn’t dread any class as much as I dreaded art, although I hated Latin and Piano too. Art was different. Deep down I wanted to be good at art, I wanted to create something and I wanted to be cool. At the end of term when portfolios were handed in I sighed. The hours I had spent looking out the window meant I had nothing to show.

RecentlyI turned up at an art class. I was gripped with fear. The room was light. The easels stood in an empty circle. The sound of traffic outside couldn’t drown out the sound of my thoughts, what was I doing here? We were invited to set up our easels, pick our materials and attach a sheet of paper. The masking tape stuck to my fingers and my easel slipped. I couldn’t find the space to stand, my feet seemed too large and I wanted to run. I debated whether it was more embarrassing to stay or leave. I stayed.

The eloquent teacher stood in the centre of the circle and took as on a journey. We had to respond. I looked at the chalk in my hand and willed it to the paper. Each time I picked up a colour I sighed. The next exercise was easier, all scrunching things, ripping things and yes, more masking tape.

Finally we had to draw each others portraits. I knew I was standing next to someone who could actually draw. A kindly man. A quiet man. A big man. I sat first. He drew. I closed my eyes. The tutor said it was interesting that some artists find when sitting the time passes slowly and when drawing the reverse. I could have sat all day.

Then I drew and laughed and swapped portraits and Francisco was kind and told me that he was lucky that he had an aunt that had taught him how to use charcoal. And I so wished my aunt’s had. But I thought this Sunday morning had been good and different and challenging. I wiped the chalk from my hands and binned the em, rusty shed and smiled as I thought not of care or dead nuns but of happy people in a studio in a gallery off the Finchley Road. Not exactly cool but at least I tried.

If you would like to try an art class at http://camdenartcentre.org sign up to their newsletter. Despite losing funding a new schedule will becoming soon.

P.S. I booked a series of 4 classes and for all the wrong reasons I have only made one. The last one is this Sunday- await a new masterpiece…

Have I lost my quiet voice?
the one that listened 
the one that waited
the one that gave space
                               for thoughts     to rise
Have I lost that voice
in the clamour to be heard 
on behalf of one 
who has a quiet voice herself
Wouldn't it be better
if her voice were heard?