Tracey Baillie: The lack of access for deaf couples dealing with infertility, adoption and surrogacy (with BSL video)

In this blog I would like to raise awareness of the current barriers in place that prevent deaf people from having an informed and positive experience when dealing with infertility, adoption and surrogacy.

To watch this article signed by Abigail Gorman, click play below or scroll down to continue in English:

For the last eight years I’ve had such a long journey and the barriers I’ve encountered have robbed me of so much in my life.

Dealing with infertility or navigating adoption/surrogacy is stressful enough without the added difficulty of lack of BSL provision or deaf awareness. Being deaf and trying to resolve issues myself has felt like an extra burden.

On a personal level, it seems that when a couple get married it’s a common assumption that they will have children soon after. With the deaf community being as small as it is, I’ve not always felt comfortable sharing the details of my experience and feel very exposed when asked bluntly ‘when are you going to have kids?’

I have many friends who have children and they often meet up for family outings, something that I often felt excluded from. Therefore my journey to becoming a Mother has been a frustrating and isolating one. I’ve even felt myself become incredibly anxious about meeting friends at deaf events because I’m expecting them to blurt out ‘why don’t you have children yet?’

My struggles have been extremely emotional and challenging for us as a couple so I have not shared details of our journey, until now, as I feel it is important to raise awareness of how difficult infertility can be for deaf people.

Our first rounds of IVF were carried out under the NHS and they do fortunately provide an interpreter at all appointments. However, when the IVF wasn’t successful I was discharged and left with the only option of self funding through a private clinic.

Private clinics don’t provide interpreters and I was told to bring a friend or relative. My husband and I both have deaf families and we didn’t feel comfortable bringing a hearing friend. So, on top of paying for the IVF we then had to fund our own BSL interpreter.

When trying for a baby, many hearing couples receive information about holistic therapies that may support a woman to get pregnant. Being deaf, I felt really behind in all of this useful information. A friend once suggested acupuncture so I went along to a session but was met with a practitioner that I couldn’t lipread. We relayed information back and forth on pen and paper, but as I lay down the whole time – supposed to be relaxing – I felt tense and on edge. I spent so much money on that but gained nothing from it.

Even online, there is no information or advice available in BSL for women who are trying to get pregnant. Hearing people have the luxury of reading or listening to podcasts. They can learn about vitamins, nutrition, or acupuncture, reflexology, and even further immune testing, but none of this is available in BSL. I’m aware of forums online for deaf people to share advice or news of their IVF journey but as the community is so small, I value my privacy and would rather gain information from BSL resources online.

I even asked a well known deaf charity if they have a counsellor who is able to talk to me about infertility but they don’t. Surely, I’m not the only deaf person in this situation that would benefit from receiving information in BSL?

I was advised to attend fertility shows to receive more informed information about private clinics and treatments, but again these were all inaccessible. Each time I asked about an interpreter, I was told to find something myself. I could have challenged this but it has been emotionally exhausting after experiencing so much loss.

When I did begin IVF with the private clinic I didn’t bring an interpreter. I was already familiar with how the process worked and the consultant agreed to communicate with me via email. It wasn’t all smooth sailing though, as I had to decipher English jargon via email.

I also sadly had recurring miscarriages and when these happened I had to go to hospital. Unfortunately these happened over the weekend when there was no interpreter available for me. I’ve also had scans without an interpreter where I’ve been told the foetus no longer had a heartbeat – I could just tell what the news was from the doctors face.

After these losses, I was passed a leaflet for miscarriage counselling but when I asked about access, they said they didn’t know and that I’d have to find out myself. It feels so unfair that although I’m grieving I still have the pressure of having to sort out my own access needs.

There is a large charity online that offers support to those who have had miscarriages or still births but there is no information available in BSL. Anyhow, after all of this upset, a close friend of ours suggested surrogacy and even offered to carry our baby for us – but we didn’t feel comfortable with this idea at that time.

We then decided to look at another option, adoption. Council based agencies do provide interpreters but they tend to only look for children in their area whereas private agencies don’t have BSL access but look nationwide. Every agency is different with different levels of after care. We felt we had no choice but to go through the council as they would guarantee a BSL intepreter.

We then began the process of going through the stages to become approved parents, which was tough. I felt this quite intrusive and there was so much paperwork involved. I was taken aback by some of the questions we were asked, aimed at our deafness. “How would we hear the baby cry?” “Would we force the child to use BSL?” They even mentioned lipreading classes for my husband to attend! We spent so much time trying to educate them as to what deaf people can do.

Eventually we were finally approved to become adoptive parents during lockdown 2020. We were soon contacted again to say they had found a deaf toddler who may benefit from having BSL-using parents. We expressed a keen interest and asked to set up a meeting to find out more.

They then emailed us some questions that we had to answer, relating to how we could support the child and their deafness as they also had a hearing aid. I explained that as a hearing aid user myself I’d be familiar with audiology clinics and equipment etc. However after answering the questions we were then told a firm ‘no’ based on the fact that we were deaf without clear speech.

I was shocked and outraged. Our social worker, who was trying to be supportive, told us that unfortunately she does see discrimination happen all the time in the adoption process. I decided I wanted to challenge this decision and spent a weekend writing up my response with some support.

I explained about the importance of supporting a deaf child’s mental health, my knowledge of the BSL language, deaf culture and the benefits of being part of a deaf community and wrote a strong case for why we felt we meet the child’s needs. The council agency reluctantly agreed to having a meeting about it but warned us that it was unlikely the decision would be changed.

We were told that the council agency felt our deaf families would overwhelm the child and I discovered they had made lots of assumptions about us, about our english ability and communication methods. They didn’t see anything positive in our deaf identity.

During our final meeting I expressed how I felt and why I believed we had a strong case to become the child’s parents but we were met with shrugs and a series of ‘I don’t know.’ Our final question to them was “do you want hearing parents to adopt this child?” Their response was: yes.

Even my social worker couldn’t challenge this clear case of discrimination, just reassuring us that unfairness and discrimination does happen. I felt powerless. How can hearing people decide what’s best for a deaf child? I even employed a deaf advocate in the form of a deaf social worker to support us but the agency refused to accept her in the meeting as they said there was too many of us.

Feeling exhausted, our social worker advised us to take a break and carry on looking when we felt ready. I then had some good chats with other deaf adoptive parents. They told us adoption wasn’t guaranteed and it can be a long process. I felt as though I had already been waiting so long and my mental well being wasn’t good. I felt like I’d put my life on hold and forgotten who I was. I wanted to move forward.

My friend who suggested surrogacy once again offered to help us. Considering it again, it helped that I was familiar with the ‘two deaf dads’ Matthew and Sam and their surrogate journey – which they openly share on Instagram. I learnt so much from them and during our chats I was told how we could follow the legal process of transferring the parental rights from the Surrogate to the Intended Parent/s (i.e. the parent/s who will bring up the child from birth), and how to create our own surrogacy agreement if we decided to go down the surrogacy path.

I felt so lucky to have Matthew and Sam to guide us and I am so grateful for their support. My husband and I decided not to live with any more ‘what if’s?’ and decided to go forward with surrogacy. The fact that we had a friend who offered to help was a bonus as in reality most people will meet a surrogate via an agency and I wonder how accessible that would be?

I’m pleased to say that now have a little baby girl through surrogacy and all of our appointments are going smoothly with our friend who carried our baby. As she is deaf the NHS are providing interpreters at all of her appointments which is ideal for us. It’s been such a journey so far and of course I have my worries about her, as she goes through so much with her body, but it’s a beautiful journey she’s part of for us.

Looking to the future, I wonder how can we further support deaf parents struggling with infertility? How can we raise awareness? Our journey has been emotional enough without the added stress of the lack of awareness or BSL provision, which in today’s world should be unacceptable.

I hope that providing fairer and more accessible experiences for deaf couples is something we can improve on in the future to ensure deaf couples have a happier and smoother journey at IVF clinics, adoption agencies or with surrogacy.

Despite being on such a long, hard and emotional journey I truly feel like this is the beginning of a brand new start now and I feel determined to raise awareness of it all.

Tracey has been deaf since birth and works for Deaf and Hearing support service for Hertfordshire County Council. When she is not working, she enjoys walking with her dog, travelling and photography