Nicole Lee: Survivor and advocate for ending violence against women with disabilities

As WHO releases a policy brief on violence against women with disability, we interviewed Nicole Lee, a survivor of intimate partner violence and advocate for violence prevention and response. After suffering a decade of abuse perpetrated by her former husband and carer, Nicole now uses her experience to advocate for the rights of others – especially those who may otherwise lack a voice.

Can you tell us about your experience?

I'm a woman with a physical disability plus a psychosocial disability. I'm in a wheelchair from a spinal cord injury that happened much younger in life. I was in a violent relationship with my husband that spanned over the course of ten years, which encompassed sexual violence plus physical and emotional violence, gaslighting, and coercive control. This person was also my carer so it was really hard to be able to leave. I was thinking, ‘How am I going to survive without this person?’ I didn't know where else to go. Eventually the police became involved and stepped in. They removed him from the house, which was a really shocking, scary point in time for me.

Do you think the violence you experienced was different because of your disability?

The financial abuse started when he first moved in. It was before the internet was in everybody's homes. I had never used the internet. I used to go to the post office to pay my bills. And when he came, I was denied access to that technology and told I wasn't smart enough or capable enough to understand any of this. And I just believed him. Carers come everywhere with us, whether it's to doctors’ appointments, to therapy, even to appointments at the bank. And because we've got a disability, it is seen as their role of caring. Nobody questions it. Unfortunately for disabled women, we've usually lived a lifetime of disempowering experiences. So we're already often fairly reliant on other people or we haven't been enabled to be independent or speak up or voice our opinions. This doesn’t make violence inevitable. The fact is that states and territories usually rely very heavily on informal support to provide care because it saves them a lot of money. At the same time it also creates environments where we are at risk of being exploited and abused.

What helped you to reclaim your independence?

My turning point was when I was told there could be support available in the home, that they could come in today to help me shower, to feed the dogs, to clean the house and to assist me to remain in my home independently. And that was when I realised, ‘Oh, I don't need him to look after me. I don't need him in my life to help me survive.’ That was the first time in my adult life with children that I was supported to live independently and to be an independent woman and mother and single mum. I didn't have to worry, ‘Am I going to lose my children? Am I going to end up in care?’ Because having to choose living with a violent partner versus ending up in, say, a nursing home or losing your children? You know, I would have taken having a violent partner returned to my home out of fear of losing my children from my life.

Why is it more difficult for women living with disability to report violence?

Unfortunately, we often don't get believed. A lot of us don't make reports to police. A lot of us don't speak up. Much of this is due to stigma and discrimination. And if you get dismissed once, you tend to not reach out for help or speak up because of fear of being dismissed again. The worst responses I got were in mental health facilities. I was disclosing to them what was happening and rather than believing me, they were bringing in my husband to have the conversation with him and they kept discharging me back into his care. I can't explain just how broken I felt in these moments. And that's the really scary thing. How many other women are going to hospital and into emergency departments and being treated like this? That's why change is imperative.

What would you like responders to know?

For anybody working with somebody who may be experiencing violence, if somebody discloses to you what is happening, it’s important to acknowledge what you're hearing. People may not be ready to leave. They may not be fully ready to identify their experience. But if someone's saying something bad is happening, actually go, ‘I'm so sorry that's happened. You know, that's not okay. This is violence and you don't deserve to live like that.’ Because we need that feedback loop. Often women are downplaying the severity of that violence in our own minds. And we're thinking, ‘Oh, it's not that bad, or I did all these things wrong, so therefore it's justified’. Validating helps build up that confidence inside the person, constantly letting them know they deserve better, that this is not okay and that they deserve to live free from violence.

What changes do you want to see in the broader system?

Ultimately, it’s not just a disability sector issue, it's a family violence and a women's sector issue. We need all of these areas to work together to prevent violence against women with disabilities. One important piece is making sure that every family violence service is accessible to all women. But it needs to be more than just access. What if a woman doesn't have services or support to physically get to the refuge? And she has no funds or services to help her to stay in that refuge? The ramp can be the best ramp in the world, but without the means to support her in that environment, she can't go there, she can't get there, and she can't stay there. That’s where emergency funding comes in. The person needs to be able to hire support workers to help them with their day-to-day disability care needs. And then making sure they've got somebody to work with over a longer period of time to rebuild their lives. We also need a shift in community attitudes. Attitudinal barriers create a lot of environments where we're not safe to leave or we can't leave.

Do you have advice on recovery for other Survivors?

I've well and truly been able to take back a lot of control of my life. But there's still a lot of ways in which trauma impacts my ability to do some things from day to day. We don't speak about this process very well. In the beginning I would think that, ‘Well, now I'm out of the violence. Everything will be okay. I'll be able to sleep better at night, everything will be fine.’ And then the memories came back, the nightmares came in and then the flashbacks and everything. I don't think it ever really leaves you. There's no end date to recovery. But I think back to where I was sitting on my bedroom floor crying because I didn't know how the internet worked. I left school early. I've since returned to education. I've started to realize that I am capable. I still sometimes feel like I'm not good enough and I can't do it, but ultimately I know deep down I can. Time is a really important thing to communicate. It is a journey and it will ebb and flow. Being able to navigate it and getting the right support in place to be able to do that is vital.