Thread by @katiegollop

Jane Campbell’s husband Graham died of AIDS on 19 December 1993 aged 34 after “five years of torture”.

Today, she told the @bloodinquiry about their life, his illness, her thoughts on haemophilia and disability discrimination and women carers.

This is her and Sir Brian:

Graham had severe haemophilia and did everything he shouldn’t to prove he wasn’t disabled. They met at a college for disabled young people aged 16 - “we were so hungry for knowledge and life outside a special school we went a bit mad”.

She was a bit shy and he didn’t want a ...

Girlfriend in a wheelchair. She wanted an able bodied boyfriend and had her eye on him - “he was my freedom”. They got together and had a lot of fun.

She went to uni in Hertfordshire and he to uni in Yorkshire. They decided they needed to find themselves in the outside world ...

Despite other partners they kept in touch and got back together.
They were lucky to get a council house being desperate to start out and leave the parental homes.

He had to be her carer: “He said I was light as a feather and he was fit so we would manage”.

Except he wasn’t fit.

He had lots of bleeds and had to “jack up” with Factor in the mornings to lead a normal life and avoid a wheelchair. He worked as a heating engineer and was encouraged to do so - he couldn’t have worked without prophylactic Factor.

Then in June 1985 he was told he’d tested ...

Positive for HIV: “We didn’t understand the seriousness of the diagnosis - people protected us as disabled people. They said it wasn’t the same AIDS as we were hearing about on the news b/c “It’s different for haemophiliacs”.”
We said good as we were getting married.
They said...

They’d call back if they had more news.
They didn’t call back.
“Maybe we put our heads in the sand but we were so keen on doing all the things we’d been prevented from doing for so long.”
We didn’t make the link with the AIDS virus. Ridiculous but they‘d said he’d be alright...

You need to understand the psychology of disabled people at the time.We tried to prove we were ordinary and hid things so we could go to the pub, get a job.We rebelled against our stigma.
As a haemophiliac with excruciating pain Graham never complained but concentrated on living.

In June 1987, Graham was recalled.

All haemophiliacs contaminated by Factor were being reviewed.

The doc said: his AIDS wasn’t different it was the same, Graham would probably get quite ill with chest infections and unknown things, there was a new drug with side effects...

She felt the room getting smaller and smaller.
Graham asked one question: am I going to die?
The doctor said yes.
And nothing was ever the same.
Then her father was killed in a car crash.
They were getting married. She felt:“This is all wrong. This should be the happiest time.”

We tried to tell ourselves there would be a cure and he would be fine. We could not take in the enormity.
We were so young, not just in age but experience.
We had been cocooned for so many years and only just beginning to live.
When we left the hospital we didn’t speak....

Probably we never talked properly.
AZT was “a disgusting drug”. Made the quality of life of Graham’s last few years “atrocious”. Hard to work because AZT made him so ill.
He was 14 stone when we married, could throw me in the air and lift me with one hand. He’d pick me out of ...

My chair and dance with me - he was like a big bear. He lost half his body weight. Horrible to watch.

He’d been w/out fear, fun loving and beloved. Beautiful Yorkshire accent. We went up on the moors - a dream life for someone in a wheelchair who’d never gone anywhere. He’d say:

“With your brains and my brawn we can do anything!”
It all changed: he became depressed and terribly worried about what would happen to me.
The Factor contaminated our marriage, relationship, everything we touched.
And we couldn’t tell anyone.
He could work less and less....

I became the breadwinner. That dependence on me was crushing for him. I have a progressive impairment so I was getting weaker. But I had to work - we had no money and were quite poor.
He was too ill to care for me and it was hard to get carers b/c of the AIDS stigma. Though I’d..

Tested negative I told people figuring they’d find out sooner or later. Most didn’t want to work for us.
Carers paid by benefit wouldn’t start early enough to allow me to get to work so I paid them from my wages.
I campaigned for Direct Payments - came in just before he died.

Sometimes we were both too ill to make a cup of tea so we’d sit for hours without a drink.

Sometimes he couldn’t get to the door to let people in because he was losing his sight intermittently.

It was the loneliest time of my life. I was angry and not coping very well.

He was admitted with pneumonia and discharged in a desperately weak state. No one seemed to care we were both disabled. They wouldn’t believe me that we didn’t have people looking after us.
Graham’s younger brother, also an infected haemophiliac, was dying from AIDS. Graham said

It was unbearable to watch his brother die and at the same time see his own future.
I worked harder so he could have the things I wanted him to have at the end of his life.
We took the Gov ex gratia payment even though we had to sign the form saying we wouldn’t sue. Needed the £s

We called it “blood money”.

Jane talked about her life after Graham. The panic attacks and illness. Her campaigning work. Her second marriage. Of double discrimination as a disabled person and a woman. About caring: “As partners, we had to live it with them. There all the time.”

No one recognised we had to not be wth our loved ones because we had to work. No one explained about the actual illness - that it was from contaminated blood - we had to get that from the news. In the NHS there was a code of silence, evidence just wasn’t forthcoming.

She said:

“Well sisters - it was rubbish and you have a right to feel unsupported because you were.”

Haemophiliacs in the 1970s/80s/90s were treated like children. Medics thought it would be better if they didn’t know and didn’t want to stop them taking the products they knew were or ...

Might be contaminated since they were going to die anyway.
“I believe there was a strain of disability discrimination at large at that time so it’s complex.”

She thanked Theresa May for setting up the Inquiry - “no other Gov did that because they felt it wasn’t worth it”.

She said she’s a jolly person who doesn’t normally cry or have a squeaky voice. She’s bloody minded - has to be: she’s dealing with Brexit! - which is nothing compared to that time which was “so dark, so horrible”.

And she ended by saying this:

“If we could just have the truth...that would be absolutely fantastic. I absolutely know that the truth will enable me to finally make sense of that time and hopefully, I won’t feel the darkness that hangs over a huge chunk of my life.”